Directory of Organizations
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Collaborative for Communication Access via Captioning (CCAC)
Founder and Chairperson: Lauren E. Storck, Ph.D.
Address: , , ,
E-mail: ccacaptioning@gmail.com
Internet: www.ccacaptioning.org
Description:
The Collaborative for Communication Access via Captioning (CCAC) is a grassroots volunteer network that advocates for the universal inclusion of quality captioning (subtitles and real-time captioning). Membership forms are available on the website. CCAC collaborates with other groups and individuals to ensure that captioning becomes available in all needed places (education, employment, entertainment, transportation, government, telecommunications, the Internet, social participation, etc.). Members use an active online forum to request and provide guidance to facilitate inclusion of captioning whenever possible. CCAC members also offer local education and awareness workshops, conference presentations, and articles. Consumer members are eligible to request free captioning services from provider members in selected situations.
Publications:
CCAC website articles
Frequency:
Type: other
CCAC Blog
Frequency:
Type:
CCAC Blog
Frequency:
Type:
Rocky Mountain Taste and Smell Center
Co-directors: Diego Restrepo, Ph.D. and Thomas E. Finger, Ph.D.
Address: 12801 East 17th Avenue, MS 8108, P.O. Box 6511, Aurora, CO, 80045-2530
Voice: (303) 724-3405
Fax: (303) 724-3420
E-mail: Diego.Restrepo@ucdenver.edu
Internet: www.ucdenver.edu/academics/colleges/medicalschool/centers/tastesmell/Pages/tastesmell.aspx
Description:
The Rocky Mountain Taste and Smell Center (RMTSC) brings together multidisciplinary investigators to examine the fundamental cellular processes that underlie the chemical senses, including their dysfunctions and clinical implications. The program includes collaborative, multifaceted studies on the neurobiology of the senses of taste and smell in humans and other vertebrates, with a focus on elucidating basic biological and clinical problems related to chemical senses. The center receives support from the National Institute on Deafness and Other Communication Disorders.
American Otological Society (AOS)
President: Herman A. Jenkins, MD
Public Information Contact: Shirley Gossard, Administrator
Address: Administrative Office, 3096 Riverdale Road, The Villages, FL, 32162
Voice: (352) 751-0932
Fax: (352) 751-0696
E-mail: segossard@aol.com
Internet: www.americanotologicalsociety.org
Description:
The American Otological Society (AOS) is a professional organization that works to advance and promote medical and surgical otology/neurotology, including the rehabilitation of individuals with hearing and balance disorders, and to encourage, promote, and sponsor research in otology/neurotology, lateral skull base surgery, and related disciplines. The educational mission of AOS is to foster dialogue and share information on advances in the understanding and management of otological and neurotologic disorders. Holds annual meeting for members; visit the AOS website for date and location. AOS also publishes peer-reviewed papers and discussions presented during the scientific program of its meeting as well as proceedings of its business meetings.
Publications:
Otology & Neurotology
Frequency: published eight times a year,
Type: professional journal
National Aphasia Association (NAA)
Executive Director: Ellayne Ganzfried, M.S., CCC-SLP
Address: 350 7th Avenue, Suite 902, New York, NY, 10001
Voice: (212) 267-2814
Toll-free Voice: (800) 922-4622
Fax: (212) 267-2812
E-mail: naa@aphasia.org
E-mail: responsecenter@aphasia.org
Internet: www.aphasia.org
/ www.aphasia.org/store
Description:
The mission of the National Aphasia Association (NAA) is to educate the public about aphasia as a disorder that impairs a person’s ability to communicate without impairing a person’s intellect. NAA provides people with aphasia, their families, support systems, and health care professionals with resources that can help individuals affected by aphasia recover lost skills, compensate for skills that cannot be recovered, and minimize the psychosocial impact of a language impairment. Holds regional conferences; contact NAA for dates and locations. A professional/consumer newsletter, directory, fact sheets, and other publications are available.
Publications:
NAA Newsletter
Frequency: Quarterly
Type: e-newsletter
Association for Research in Otolaryngology (ARO)
President: Debara Tucci, M.D.
Executive Director: Darla M. Eastlack
Address: 19 Mantua Road, Mt. Royal, NJ, 08061
Voice: (856) 423-0041
Fax: (856) 423-3420
E-mail: headquarters@aro.org
Internet: www.aro.org
Description:
The Association for Research in Otolaryngology (ARO) is an international scientific society of researchers who investigate basic science and clinical problems associated with hearing, speech, balance, taste and smell, and diseases of the head and neck. ARO’s goals are to encourage both basic and clinical research in the broad field of otolaryngology and related areas and to foster friendly assembly and stimulate scientific interest among its members. Holds mid-winter research meeting; contact ARO for date and location.
Publications:
Journal of the Association for Research in Otolaryngology (JARO)
Frequency: quarterly
Type: professional journal
National Rehabilitation Information Center (NARIC)
Project Director: Mark X. Odum
Public Information Contact: Catherine Graves, Library Information Specialist II
Address: 8201 Corporate Drive, Suite 600, Landover, MD, 20785
Voice: (301) 459-5900
Toll-free Voice: (800) 346-2742
TTY: (301) 459-5984
Fax: (301) 459-4263
E-mail: naricinfo@heitechservices.com
Internet: www.naric.com
Description:
The National Rehabilitation Information Center (NARIC) is a library and information center focusing on disability and rehabilitation research. NARIC’s collection contains more than 40,000 documents, both federally funded and commercially produced. NARIC’s information specialists provide quick information and referrals, customized database searches, and document delivery. Internet users can access NARIC’s databases, bulletins, and a live reference chat service at the NARIC website. Referral sheets, general information packets, and customized literature searches are available.
Publications:
reSearch
Frequency: bimonthly
Type: research brief
St. Joseph Institute for the Deaf (SJI)
President: Deborah S. Wilson
Chief Operating Officer: Cindy Costello
Address: 1809 Clarkson Road, Chesterfield, MO, 63017
Voice: (636) 532-3211
Fax: (636) 532-4560
E-mail: info@sjid.org
Internet: www.sjid.org
Description:
St. Joseph Institute for the Deaf (SJI) is committed to the spiritual and emotional growth and personal development of hearing-impaired children and young adults. SJI teaches children with hearing loss to hear, speak, and read from birth to eighth grade, regardless of race, religion, gender, or finances. Programs include early intervention; toddler, preschool, and kindergarten through eighth-grade classes; I-Hear teletherapy services; evaluations; local district partnerships; and mainstream consultancy. SJI has an onsite audiology clinic in Chesterfield, Mo.
National Spasmodic Dysphonia Association, Inc. (NSDA)
Executive Director: Kimberly A. Kuman
Address: 300 Park Boulevard, Suite 415, Itasca, IL, 60143
Voice: (630) 250-4504
Toll-free Voice: (800) 795-NSDA (6732)
Fax: (630) 250-4505
E-mail: NSDA@dysphonia.org
Internet: www.dysphonia.org
Description:
The National Spasmodic Dysphonia Association (NSDA) is a nonprofit 501(c)(3) organization dedicated to advancing medical research into the causes of and treatments for spasmodic dysphonia; promoting physician and public awareness of the disorder through outreach; and sponsoring support activities for people with spasmodic dysphonia and their families through educational materials, annual symposiums, support groups, and online resources. NSDA is the only organization that is dedicated solely to spasmodic dysphonia.
Publications:
Our Voice
Frequency: semiannual
Type: newsletter
Understanding Spasmodic Dysphonia
Frequency:
Type: informational brochure
Understanding Spasmodic Dysphonia
Frequency:
Type: informational brochure
Acoustical Society of America (ASA)
Executive Director: Charles E. Schmid, Ph.D.
Public Information Contact: Elaine Moran
Address: 2 Huntington Quadrangle, Suite 1NO1, Melville, NY, 11747-4502
Voice: (516) 576-2360
TTY: (516) 576-2360
Fax: (516) 576-2377
E-mail: asa@aip.org
Internet: asa.aip.org
Description:
The mission of the Acoustical Society of America (ASA) is to promote the understanding and practical applications of acoustics. ASA publishes a monthly journal covering all topics in acoustics, including speech and hearing. A magazine, a professional directory, and professional brochures and monographs/books also are available. Holds two meetings each year; see the ASA website for dates and locations.
Publications:
Acoustics Today
Frequency: quarterly
Type: magazine
JASA Express Letters
Frequency: as accepted
Type: short journal articles published online
JASA Express Letters
Frequency: as accepted
Type: short journal articles published online
Brain Injury Association of America
President/CEO: Susan Connors
Director of Consumer Services: Greg Ayotte
Address: 1608 Spring Hill Road, Vienna, VA, 22182
Voice: (703) 761-0750
Toll-free Voice: (800) 444-6443
Fax: (703) 761-0755
E-mail: braininjuryinfo@biausa.org
Internet: www.biausa.org
/ www.acbis.pro
Description:
A traumatic brain injury can cause a wide range of functional changes affecting thinking, language, learning, emotions, behavior, and sensation. The mission of the Brain Injury Association of America (BIAA) is to be the voice of brain injury, and to offer help, hope, and healing to all those affected by brain injury. BIAA offers a toll-free National Brain Injury Information Center (800-444-6443), with information about brain injury and local resources available to callers. BIAA also offers certification for professionals who work with people with brain injury. Webinars are available on a wide range of topics. Check the BIAA marketplace for information about available webinars.
Publications:
Challenge!
Frequency: quarterly
Type: newsletter
Registry of Interpreters for the Deaf, Inc. (RID)
President: Brenda Walker Prudhom
Director of Communications: Tina Schultz
Address: 333 Commerce Street, Alexandria, VA, 22314
Voice: (703) 838-0030
TTY: (703) 838-0459
Fax: (703) 838-0454
E-mail: publications@rid.org
Internet: www.rid.org
Description:
The mission of the Registry of Interpreters for the Deaf, Inc., (RID) is to provide international, national, regional, state, and local forums with an organizational structure for the continued growth and development of the profession of interpretation and transliteration of American Sign Language and English. Holds biennial conference; contact RID for date and location. Professional journal, newsletter, directory, fact sheets, brochures, and books are available.
Publications:
Journal of Interpretation
Frequency: annual
Type: professional journal
VIEWS
Frequency: quarterly
Type: magazine
VIEWS
Frequency: quarterly
Type: magazine
American Auditory Society (AAS)
President: Timothy Trine, Ph.D.
Executive Director: Darla M. Eastlack
Address: 19 Mantua Road, Mt. Royal, NJ, 08061
Voice: (856) 423-3118
Fax: (856) 423-3420
E-mail: aas@talley.com
Internet: www.amauditorysoc.org
Description:
The purpose of the American Auditory Society (AAS) is to increase knowledge and understanding of the ear, hearing, and balance; their disorders and how to prevent them; and habilitation and rehabilitation of individuals with hearing and balance dysfunction. AAS coordinates and disseminates information, particularly through regular meetings, sponsorships, and publication of a professional journal and newsletter and other informational materials. Holds annual meeting; contact AAS for date and location.
Ear & Hearing
Frequency: bimonthly
Type: professional journal
Ear & Hearing
Frequency: bimonthly
Type: professional journal
CHERAB Foundation
Founder: Lisa Geng
Address: P.O. Box 8524, Port St. Lucie , FL, 34985
Voice: (772) 335-5135
E-mail: help@cherab.org
Internet: www.cherab.org
/ www.apraxia.org
Description:
The CHERAB Foundation (CHERAB) is a worldwide nonprofit organization that helps individuals with speech and language delays and disorders through communication help, education, and research that is apraxia-based. Its area of emphasis is verbal and oral apraxia, which are severe neurologically based speech and language disorders that hinder children's ability to speak. The foundation is committed to assisting with the development of new therapeutic approaches to, and prevention and cure of, neurologically based speech disorders. CHERAB brings together parents and medical, research, and educational professionals to help give a voice to all. Sign up to receive updates at http://twitter.com/TheLateTalker.
Association of Late-Deafened Adults (ALDA)
President: Cynthia Amerman
ALDA eNews: Ken Arcia
Address: 8038 Macintosh Lane, Rockford, IL, 61107
Voice: (815) 332-1515
Toll-free Voice: (866) 402-ALDA (2532)
Toll-free TTY: (866) 402-ALDA (2532)
E-mail: info@alda.org
E-mail: president@alda.org
Internet: www.alda.org
Description:
The Association of Late-Deafened Adults (ALDA) serves as a resource center providing information and referrals, self-help, and support groups for people deafened as adults. ALDA works to increase public awareness of the special needs of deafened adults. Holds annual conference; contact ALDA for date and location. A professional/consumer directory, proceedings of conventions, and fact sheets are available.
Publications:
ALDANews
Frequency: quarterly
Type: professional/consumer newsletter
ALDA eNews
Frequency: monthly, or as needed
Type: e-mail news update
ALDA eNews
Frequency: monthly, or as needed
Type: e-mail news update
Council for Accreditation in Occupational Hearing Conservation (CAOHC)
Executive Director: Kim Breitbach
Executive Director: Kim Breitbach
Address: 555 East Wells Street, Suite 1100, Milwaukee, WI, 53202-3823
Voice: (414) 276-5338
Fax: (414) 276-2146
E-mail: info@caohc.org
Internet: www.caohc.org
Description:
The main objective of the Council for Accreditation in Occupational Hearing Conservation CAOHC) is to provide education, information, and guidance to industry and mining and to those serving industry and mining for the successful implementation of an occupational hearing conservation program. See the website for the “Scope of Practice: The Professional Supervisor of the Audiometric Monitoring Program” (the audiometric portion of a hearing conservation program), “CAOHC Certified Occupational Hearing Conservationist Scope of Practice and Limitations,” archived newsletters, and other comprehensive information.
Publications:
UPDATE
Frequency: triannual
Type: professional newsletter
Hearing Conservation Manual
Frequency: every 5 years
Type: comprehensive manual related to hearing conservation
Hearing Conservation Manual
Frequency: every 5 years
Type: comprehensive manual related to hearing conservation
Voice Academy
Project Director: Julie Ostrem, M.B.A.
Public Information Contact: Julie Ostrem
Address: University of Iowa, Speech Pathology & Audiology, Iowa City, IA, 52242
Voice: (319) 335-6600
Fax: (319) 335-6603
E-mail: julie-ostrem@uiowa.edu
Internet: www.voiceacademy.org
Description:
The Voice Academy is a self-paced, no-cost website created to help school teachers prevent and self-manage voice disorders, which, unfortunately, are common in the profession. This website features a virtual school where teachers explore topics such as voice production basics, safe classroom acoustics, amplification system use, and the healthy body/healthy voice connection. The website also features an auxiliary curriculum for school-based speech-language pathologists or other advocates to present a 50-minute healthy voice seminar to their teacher colleagues.
Neurofibromatosis, Inc. (NF, Inc.)
President: Miguel Lessing
NF-2 Consultant: Marie Drew
Address: P.O. Box 66884, Chicago, IL, 60666
Voice: (630) 627-1115
Toll-free Voice: (800) 942-6825
E-mail: admin@nfinc.org
Internet: www.nfinc.org
Description:
Neurofibromatosis, Inc., (NF, Inc.) is a national nonprofit organization dedicated to all people affected by neurofibromatosis (NF) and other related disorders. NF, Inc., distributes materials on NF1 and NF2; promotes national, state, and local community involvement; supports research; has a governing board with NF2 representation; and provides real-time captioning at meetings. A toll-free helpline and website provide access to peer counseling and information 24 hours a day. A professional directory and professional/consumer publications are available.
Publications:
Neurofibromatosis Ink
Frequency: semiannual
Type: professional/consumer newsletter
Virginia Merrill Bloedel Hearing Research Center (VMBHRC)
Director: Jay Rubinstein, M.D., Ph.D.
Business Development Manager: Carolyn Higgins
Address: University of Washington, Box 357923, Seattle, WA, 98195-7923
Voice: (206) 685-2962
Voice: (206) 616-4105
Fax: (206) 616-1828
E-mail: bloedel@uw.edu
Internet: depts.washington.edu/hearing
Description:
The Virginia Merrill Bloedel Hearing Research Center (VMBHRC) at the University of Washington conducts interdisciplinary research on hearing, hearing loss, and related communication disorders. Through its diverse programs that foster national and international collaboration between top experts in the field, the center advances the fight against deafness and disequilibrium on the fronts of protection, intervention, and regeneration. The center provides invaluable support to patients, the scientific community, and the general public.
Publications:
Bloedel Sound
Frequency: annually
Type: newsletter
Academy of Rehabilitative Audiology (ARA)
President: John Greer Clark, Ph.D.
Association Coordinator: Joy Benn
Address: P.O. Box 86, Fontana Dam, NC, 28733
Fax: (888) 552-7441
E-mail: ara@audrehab.org
Internet: www.audrehab.org
Description:
The Academy of Rehabilitative Audiology (ARA) was founded
in 1966 as a forum for the exchange of ideas, knowledge, and
experience related to rehabilitative aspects of audiology and associated disciplines. Membership in ARA is open to professionals holding a graduate degree in audiology, speech-language pathology,or the education of persons with hearing impairment. Associate and student memberships are also available. Holds annual institute;contact ARA for date and location. A professional newsletter/bulletin, directory, and books and monographs are available.
Publications:
The Pinnacle
Frequency: quarterly
Type: professional newsletter
American Tinnitus Association (ATA)
Executive Director: Michael Malusevic
Director of Public Affairs: Jennifer Born
Address: P.O. Box 5, Portland, OR, 97207-0005
Voice: (503) 248-9985
Voice: 800-634-8978
Toll-free Voice: (800) 634-8978
Fax: (503) 248-0024
E-mail: jennifer@ata.org
E-mail: mike@ata.org
Internet: www.ata.org
Description:
The American Tinnitus Association (ATA) exists to cure tinnitus by developing resources that advance tinnitus research. Founded in 1971, ATA has raised and allocated millions of dollars toward medical research projects focused on a cure for tinnitus. ATA also advocates for effective public policies that support its mission. ATA publishes a triannual magazine in April, August, and December. The magazine includes detailed articles on current research, treatment, and other information for those living with tinnitus and others interested in staying current in this field. Articles from prior issues are available on the ATA website. A consumer directory, fact sheets, and other publications for professionals and consumers also are available online and in print.
Publications:
Tinnitus Today
Frequency: triannual
Type: journal
ATA Electronic Newsletter
Frequency: triannual
Type: newsletter
ATA Electronic Newsletter
Frequency: triannual
Type: newsletter
Conference of Educational Administrators of Schools and Programs for the Deaf (CEASD)
Executive Director: Joe Finnegan
Executive Director: Joe Finnegan
Address: P.O. Box 1778, St. Augustine, FL, 32085-1778
Voice: (904) 810-5200
TTY: (904) 810-5200
Fax: (904) 810-5525
E-mail: nationaloffice@ceasd.org
E-mail: office@ceasd.org
Internet: www.ceasd.org
Description:
The Conference of Educational Administrators of Schools and Programs for the Deaf (CEASD) is an association of schools and programs involved with the education of deaf and hard-of-hearing individuals. Founded in 1868, CEASD is committed to promoting excellence within a continuum of equitable educational opportunities for children and adults who are deaf or hard-of-hearing. At the national level, CEASD serves as an advocate for the deaf and hard-of-hearing with governmental bodies that establish educational policy and implement federal legislation. Holds annual convention; contact CEASD for date and location. A professional journal, newsletter, directory, brochures/pamphlets, and online publications are available.
Publications:
American Annals of the Deaf
Frequency: quarterly journal
Type: supplemented by an annual reference issue of schools and programs
Noise Pollution Clearinghouse (NPC)
Executive Director: Les Blomberg
Public Information Contact: Information Specialists
Address: P.O. Box 1137, Montpelier, VT, 05601-1137
Voice: (802) 229-1659
Toll-free Voice: (888) 200-8332
Fax: (802) 223-3266
E-mail: npc@nonoise.org
Internet: www.nonoise.org
Description:
The mission of the Noise Pollution Clearinghouse (NPC) is to create more livable cities and more natural rural and wilderness areas by reducing noise pollution at the source. NPC seeks to raise awareness about noise pollution; creates, collects, and distributes resources on noise pollution; and establishes networks among environmental, professional, medical, governmental, citizen, and activist groups working on noise pollution issues. Consumer fact sheets and newsletters are available.
Publications:
Quiet Zone
Frequency: semiannual
Type: newsletter
NPC Special Report
Frequency: quarterly
Type: issue briefs
NPC Special Report
Frequency: quarterly
Type: issue briefs
National Cued Speech Association (NCSA), Deaf Children's Literacy Project
President: Shannon Howell
Executive Director: Marah Baltzell
Address: 1300 Pennsylvania Avenue, NW, Suite 190-713, Washington, DC, 20004
Toll-free Voice: (800) 459-3529
Toll-free TTY: (800) 459-3529
E-mail: info@cuedspeech.org
E-mail: president@cuedspeech.org
Internet: www.cuedspeech.org
Description:
The National Cued Speech Association (NCSA) and its Deaf Children's Literacy Project promote the effective use of cued speech for communication, language acquisition (in more than 50 languages), and literacy through the use of cued speech. NCSA provides education, awareness, and support for people with language, hearing, speech, and learning needs through publications, exhibits, family/professional learning vacations, and conferences. NCSA sets standards of cueing and certifies instructors of cued speech. Visit NCSA's bookstore for books, games, computer software, and more.
Publications:
On Cue
Frequency: triannual
Type: newsletter
Gallaudet University (GU) and Laurent Clerc National Deaf Education Center
President: Dr. T. Alan Hurwitz
Executive Director, Communications and Public Relations: Catherine Murphy
Address: 800 Florida Avenue, NE, Washington, DC, 20002-3695
Voice: (202) 651-5000
Toll-free Voice: (800) 995-0550
TTY: (202) 651-5000
TTY: (202) 651-5866 (videophone)
Fax: (202) 651-5508
E-mail: public.relations@gallaudet.edu
E-mail: admissions@gallaudet.edu
Internet: www.gallaudet.edu
Description:
Gallaudet University is the world’s only university in which all programs and services are specifically designed to accommodate deaf and hard-of-hearing students. The Laurent Clerc National Deaf Education Center ensures that the diverse population of deaf and hard-of-hearing students (birth through age 21) in the nation are educated and empowered and have the linguistic competence to maximize their potential as productive and contributing members of society. The Research Institute is a leading center for research on deafness. National and international programs, including regional extension centers, conferences, sign language classes, summer programs, and international outreach, annually serve approximately 33,000 people.
Publications:
Gallaudet Today
Frequency: quarterly
Type: magazine/newsletter combination
On the Green
Frequency: biweekly
Type: newsletter
On the Green
Frequency: biweekly
Type: newsletter
Hyperacusis Network
Publisher: Dan Malcore
Address: P.O. Box 8007, Green Bay, WI, 54308
Voice: (920) 866-3377
E-mail: earhelp@yahoo.com
Internet: www.hyperacusis.net
/ chat-hyperacusis.net
Description:
The Hyperacusis Network is an international support group established to care for individuals with collapsed tolerance to sound. The network helps educate the medical community and families about this rare auditory disorder by sharing ways to cope, providing advice on how to secure disability assistance, and reporting on current research and treatment options. Membership is free. A professional/consumer newsletter, directory, fact sheets, brochures/pamphlets, and online publications are available.
Publications:
The Hyperacusis Network
Frequency: biannual
Type: professional/consumer newsletter
Disability, Inc./Sign Language USA, LLC/CAPCOM
Executive Director: Richard F. Rosen, Ph.D.
Address: P.O. Box 1246, McLean, VA, 22101
Voice: (703) 628-5472
Voice: 1-855-SIGNUSA 1-855-744-6872
TTY: (703) 628-5472 (via relay)
Fax: (520) 544-8911
E-mail: rosenlaw@att.net
Internet: www.signlanguageusa.com
/ www.attorneysworldwide.com
Description:
Disability, Inc./Sign Language USA, LLC/CAPCOM provides sign language interpreters and support services for people with disabilities. Live or live-video sign language interpreting is available 24 hours a day, 7 days a week. Services include legal counsel to deaf persons, other legal services, assistance with home mortgages, product information, and the accessibility status of businesses and other locations. Fact sheets and brochures are available.
International Deaf/Tek, Inc.
President: Brenda Monene, R.N., M.Ed.
Address: 104 Catbriar Court, Summerville, SC, 29485
Voice: (843) 873-8444
E-mail: deaftek@deaftek.org
Internet: www.deaftek.org
Description:
International Deaf/Tek, Inc., maintains Deaftek.USA, a website that focuses on employment opportunities for deaf individuals and the people who serve them. Organizations, agencies, schools, businesses, and other entities wishing to fill positions may send employment announcements to this site at no charge. Employment opportunities are posted according to category and remain on the site for two months unless longer or shorter times are requested.
AbleData
Director: Katherine Belknap, M.A.
Information Specialist: Juanita Hardy
Address: 8630 Fenton Street, Suite 930, Silver Spring, MD, 20910
Voice: (301) 608-8998
Toll-free Voice: (800) 227-0216
TTY: (301) 608-8912
Fax: (301) 608-8958
E-mail: abledata@macrointernational.com
Internet: www.abledata.com
Description:
The ABLEDATA project helps people who have disabilities, including communication disorders, by providing information about assistive devices, rehabilitation equipment, and other products. Resources include a database of more than 36,000 products. A database of citations of books, articles, and other resources related to assistive technology also is available, along with fact sheets, brochures, and online publications. ABLEDATA is sponsored by the National Institute on Disability and Rehabilitation Research.
Centers for Medicare and Medicaid Services (CMS)
Acting Administrator: Charlene Frizzera
Public Information Contact: Peter Ashkenaz, Acting Director
Address: 7500 Security Boulevard, Baltimore, MD, 21244-1850
Voice: (410) 786-3000
Voice: (202) 690-6145
Toll-free Voice: (877) 267-2323
Internet: www.cms.gov
/ www.medicare.gov
Description:
The Centers for Medicare and Medicaid Services (CMS) is a federal agency with responsibilities that include the Medicare and Medicaid programs, two national health care programs benefiting about 75 million Americans; the State Children’s Health Insurance Program; regulation of all non-research laboratory testing performed on humans in the United States; and programs assisting millions of Americans and small companies in obtaining health insurance coverage. The website www.cms.gov targets health care providers and the public, while www.medicare.gov offers information about services to beneficiaries. Publications are available.
DB-LINK at the National Consortium on Deaf-Blindness (formerly the National Information Clearinghouse on Children Who Are Deaf-Blind)
Associate Director, NCDB: John Reiman, Ph.D.
Address: 345 North Monmouth Avenue, Monmouth, OR, 97361
Toll-free Voice: (800) 438-9376
Toll-free TTY: (800) 854-7013
Fax: (503) 838-8150
E-mail: info@nationaldb.org
Internet: www.nationaldb.org
Description:
DB-LINK, part of the National Consortium on Deaf-Blindness (NCDB), is home to the largest collection of information related to deaf-blindness worldwide. A team of information specialists makes this extensive resource available in response to direct requests and via the website. Contact DB-LINK to access quality information about deaf-blindness, order a newsletter and other publications, find resources by state, receive tailored information packets to support teaching or training, and connect to a network of experts and families. Information is free. NCDB is funded by the U.S. Department of Education’s Office of Special Education Programs.
Publications:
Deaf-Blind Perspectives
Frequency: semiannual
Type: consumer/professional newsletter
American Academy of Audiology (AAA)
Executive Director: Cheryl Kreider Carey, C.A.E.
Senior Director of Communications: Amy Miedema
Address: 11480 Commerce Park Drive, Suite 220, Reston, VA, 20191
Voice: (703) 790-8466
Toll-free Voice: (800) 222-2336
TTY: (703) 790-8466
Fax: (703) 790-8631
E-mail: info@audiology.org
Internet: www.audiology.org
/ www.audiologyfoundation.org
Description:
With more than 10,000 members, the American Academy of Audiology (AAA) is the world’s largest professional organization of, by, and for audiologists. Dedicated to providing quality hearing care to the public, AAA enhances
the ability of its members to achieve career and practice objectives through professional development, education, research, and increased public awareness of hearing and balance disorders and audiologic services. Holds annual
convention; see AAA website for date and location. Resources include a professional magazine and journal, professional computer software/assisted education, online professional/consumer publications (some in Spanish), an
audiologist locator, and a professional membership directory. The American Academy of Audiology Foundation promotes philanthropy in support of research, education, and public awareness in audiology and hearing science.
Publications:
Audiology Today
Frequency: bimonthly
Type: magazine for members
Audiology Today
Frequency: monthly
Type: e-newsletter
Audiology Today
Frequency: monthly
Type: e-newsletter
National Technical Institute for the Deaf (NTID)
President of NTID & Vice President and Dean for RIT: Gerard Buckley, Ph.D.
Address: 52 Lomb Memorial Drive, Rochester, NY, 14623-5604
Voice: (585) 475-6400
TTY: (585) 475-6400
Fax: (585) 475-5623
E-mail: ntidmc@rit.edu
Internet: www.rit.edu/NTID
/ www.educatingdeafchildren.org
Description:
The National Technical Institute for the Deaf (NTID), a college of the Rochester Institute of Technology (RIT), is the world’s first and largest technological college for students who are deaf or hard-of-hearing. NTID offers associate degrees in more than 30 technological and professional programs as well as bachelor’s or master’s degrees in more than 200 programs offered by RIT’s nine other colleges. A professional journal, other publications, and computer software/assisted education are available.
Publications:
NTID Research Bulletin
Frequency: published occasionally
Type: free professional journal
Friends of Libraries for Deaf Action (FOLDA)
Founding President: Alice L. Hagemeyer, M.L.S.
Address: 2930 Craiglawn Road, Silver Spring, MD, 20904-1816
Voice: (301) 563-9062 (VP)ophone)
TTY: (301) 572-5168
Fax: (301) 572-5168
E-mail: folda86@aol.com
Internet: www.folda.net
Description:
Friends of Libraries for Deaf Action (FOLDA) is a public service of Library for Deaf Action, the deaf-owned deaf cultural programming business of Alice L. Hagemeyer. FOLDA has no membership dues. FOLDA encourages the deaf community to become involved in activities of their local public library and its friends. Organizations serving the deaf wishing to keep up with library news and deaf cultural programs may register at http://imadeamericagreat.webs.com/foldaenews.htm.
Publications:
FOLDA E: News
Frequency: regularly updated
Type: newsletter
Hearing Industries Association (HIA)
Executive Director: Carole M. Rogin
Address: 1444 I Street, NW, Suite 700, Washington, DC, 20005
Voice: (202) 449-1090
Fax: (202) 216-9646
E-mail: crogin@bostrom.com
E-mail: mspangler@bostrom.com
Internet: www.hearing.org
Description:
The Hearing Industries Association (HIA) is the national trade association of manufacturers of hearing aids, assistive listening devices, component parts, and power sources. Together, these companies produce the majority of the over 2 million hearing aids that are purchased in the United States on an annual basis. The HIA website maintains a database of media articles related to hearing aids use, research, and proposed legislation affecting their use. Fact sheets and statistical reports are available for purchase by request.
MAAP Services for Autism, Asperger, and PDD/NOS (MAAP Services)
President: Susan J. Moreno
Address: P.O. Box 524, Crown Point, IN, 46307
Voice: (219) 662-1311
Fax: (219) 662-0638
E-mail: info@maapservices.org
Internet: www.aspergersyndrome.org/
Description:
MAAP Services for the Autism Spectrum (MAAP Services) is a nonprofit 501(c)(3) organization dedicated to providing information and advice to families of more advanced individuals with autism, Asperger syndrome, and other pervasive developmental disorders. MAAP Services provides information and referrals to parents, caregivers, and professionals who are experiencing this spectrum of challenges as well as helping the individuals themselves. The organization also provides a website; printed materials; annual conferences; public presentations; and personal contact via e-mail, phone, and written correspondence. The MAAP Services newsletter is distributed in 56 countries.
Publications:
The MAAP
Frequency: Quarterly
Type: newsletter
Boys Town National Research Hospital (BTNRH)
Director: Patrick Brookhouser, M.D.
Public Information Contact: Mary Pat Moeller, Ph.D.
Address: 555 North 30th Street, Omaha, NE, 68131
Voice: (402) 498-6511
Voice: (402) 452-5068
TTY: (402) 498-6543
Fax: (402) 452-5027
E-mail: marypat.moeller@boystown.org
E-mail: Marsha,johns@boystown.org
Internet: www.boystownhospital.org
/ www.babyhearing.org
Description:
The Boys Town National Research Hospital (BTNRH) is internationally recognized for clinical service and research into the treatment of childhood deafness and communication disorders. Research is conducted in 20 state-of-the-art laboratories and represents three broad areas: neurobiological studies of hearing; hereditary communication disorders; and clinical, educational, and behavioral studies of human communication.
Hands & Voices National
Executive Director: Leeanne Seaver, M.A.
Address: P.O. Box 3093, Boulder, CO, 80307
Voice: (217) 357-3647
Toll-free Voice: (866) 422-0422
Toll-free TTY: (866) 422-0422
Fax: (217) 357-3647
E-mail: parentadvocate@handsandvoices.org
Internet: www.handsandvoices.org
Description:
Hands & Voices National is a nationwide nonprofit organization dedicated to supporting families and their children who are deaf or hard-of-hearing as well as the professionals who serve them. This organization is a parent-driven, parent/professional collaborative group that is unbiased toward any communication modes and methods. Its membership includes those who are deaf or hard-of hearing and their families who communicate orally or with signs, cued speech, or combined methods. Hands & Voices National exists to help children reach their highest potential. See the website for local chapters.
Publications:
The Communicator
Frequency: quarterly
Type: newsletter
Asperger Syndrome Education Network (ASPEN)
President: Lori Shery
Address: 9 Aspen Circle, Edison, NJ, 08820
Voice: (732) 321-0880
E-mail: info@aspennj.org
Internet: www.aspennj.org
Description:
The Asperger Syndrome Education Network (ASPEN) supports families and individuals whose lives are affected by autism spectrum disorders (ASD) (i.e., Asperger syndrome, pervasive developmental disorder, and high-functioning autism), and nonverbal learning disabilities (NLD). ASPEN provides education about the issues surrounding these disorders, support to individuals with ASD and NLD in knowing that they are not alone, and help so that they may achieve their maximum potential. ASPEN advocacy areas include educational programs, medical research funding, adult issues, and increased public awareness and understanding. ASPEN is a national volunteer 501(c)(3) nonprofit organization with headquarters in New Jersey. Members receive a newsletter and resource directory and access to ASPEN’s lending library.
Publications:
Aspects
Frequency: 2 times a year
Type: newsletter
MdDS Balance Disorder Foundation
President: Marilyn Josselyn
Foundation Board Member: Linda McManus
Address: 22406 Shannondell Drive, Audubon, PA, 19403
Voice: (610) 382-2060
Fax: (210) 641-6077
E-mail: mddsfoundation@yahoo.com
Internet: www.mddsfoundation.org
Description:
The MdDS Balance Disorder Foundation is an international, all-volunteer 501(c)(3) organization that seeks to promote awareness of, find a cure for, and assist patients suffering with MdDS. Mal de debarquement syndrome (MdDS) or disembarkment syndrome is a rare disorder of perceived motion that most often develops after an ocean cruise or other type of travel or motion experience. More common in females, MdDS symptoms include persistent and long-lasting sensations of motion (rocking, swaying, or bobbing); this perceived motion is associated with fatigue, imbalance, and impaired cognitive function. MdDS is frequently misdiagnosed or goes undiagnosed because many in the health care community are unaware. Unfortunately, effective MdDS treatments/therapies are lacking and the cause of MdDS remains unknown.
Publications:
Mal de Debarquement Support News
Frequency: quarterly
Type: newsletter
National Association of the Deaf (NAD)
Chief Executive Officer: Howard Rosenblum
Address: 8630 Fenton Street, Suite 820, Silver Spring, MD, 20910-4500
Voice: (301) 587-1788
Fax: (301) 587-1791
E-mail: www.nad.org/contactus
E-mail: nad.info@nad.org
Internet: www.nad.org
Description:
The National Association of the Deaf (NAD), founded in 1880, is a federation of state associations, organizational and corporate affiliates, and individuals advocating for the civil rights of deaf and hard-of-hearing Americans. NAD’s advocacy work encompasses a broad spectrum of areas such as accessibility, education, employment, health care, mental health, rehabilitation, technology, telecommunications, and transportation. The NAD Web site offers advocacy information and resources related to legal rights and other concerns affecting individuals who are deaf or hard-of-hearing.
Publications:
NADmag
Frequency: published two times a year (Summer/Winter)
Type: professional/consumer magazine
National Dissemination Center for Children with Disabilities (NICHCY)
Director: Elaine M. Mulligan
Information Specialist:
Address: 1825 Connecticut Avenue, NW, Suite 700, Washington, DC, 20009
Voice: (202) 884-8200
Toll-free Voice: (800) 695-0285
TTY: (202) 884-8200
Toll-free TTY: (800) 695-0285
Fax: (202) 884-8441
E-mail: nichcy@aed.org
Internet: nichcy.org
Description:
The National Dissemination Center for Children with Disabilities (NICHCY) is a national information and referral center that provides information on disabilities and disability-related issues to families, educators, and other professionals. With a special focus on children and young adults ages birth to 22, NICHCY answers questions in both English and Spanish. Fact sheets on specific disabilities, state resource sheets, and information about the Individuals with Disabilities Education Act are available. All NICHCY publications are available online at www.nichcy.org/publications.
Genetic Alliance
President /CEO: Sharon F. Terry, M.A.
Address: 4301 Connecticut Avenue, NW, Suite 404, Washington, DC, 20008-2369
Voice: (202) 966-5557
Toll-free Voice: (800) 336-GENE (4363)
Fax: (202) 966-8553
E-mail: info@geneticalliance.org
Internet: www.geneticalliance.org
Description:
Genetic Alliance improves health through the authentic engagement of communities and individuals. The organization is committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance’s network includes disease-specific advocacy organizations, universities, private companies, government agencies, and public policy organizations.
Publications:
Advocacy in Genetics
Frequency: quarterly
Type: newsletter
Policy Bulletin
Frequency: weekly
Type: newsletter
Policy Bulletin
Frequency: weekly
Type: newsletter
Hearing Health Foundation
Executive Director: Andrea Boidman
Associate, Development and Operations: Leticia Bido
Address: 363 Seventh Avenue, 10th Floor, New York, NY, 10001-3904
Voice: (212) 257-6140
Toll-free Voice: (866) 454-3924
TTY: (888) 435-6104
Toll-free TTY: (888) 435-6104
Fax: (212) 257-6139
E-mail: info@hearinghealthfoundation.org
Internet: hearinghealthfoundation.org
Description:
The Hearing Health Foundation's mission is to help individuals attain a lifetime of healthy hearing and balance through quality research, education, and advocacy. Throughout its 53-year history, the Hearing Health Foundation (formerly the Deafness Research Foundation) has awarded over 2,200 grants totaling more than $26 million to researchers exploring new avenues in hearing and balance science. Foundation-funded research has led to innovations in the diagnosis and treatment of otitis media (middle ear infections), cochlear implants, and implantable hearing aids as well as breakthroughs in molecular biology and hair cell regeneration.
Publications:
Hearing Health
Frequency: quarterly
Type: magazine
Hearing Health E-News
Frequency: monthly
Type: e-newsletter
Hearing Health E-News
Frequency: monthly
Type: e-newsletter
Easter Seals, Inc.
President/Chief Executive Officer: James E. Williams, Jr.
Information and Referral Specialist: Rosemary Garza
Address: 233 South Wacker Drive, Suite 2400, Chicago, IL, 60606
Voice: (312) 726-6200
Toll-free Voice: (800) 221-6827
TTY: (312) 726-4258
Fax: (312) 726-1494
E-mail: info@easterseals.com
Internet: www.easterseals.com
Description:
The mission of Easter Seals, Inc., is to create solutions that change the lives of children and adults with disabilities and their families. Easter Seals operates 450 sites in the United States. Its primary services are medical rehabilitation with early intervention, physical therapy, occupational therapy, speech therapy, job training and employment, children’s services (including inclusive childcare), adult and senior services, camping, recreation, and respite.
Childhood Apraxia of Speech Association of North America (CASANA)
President: Mary Sturm, M.D.
Public Information Contact: Kathy Hennessy
Address: 416 Lincoln Avenue, Pittsburgh, PA, 15209
Voice: (412) 343-7102
E-mail: helpdesk@apraxia-kids.org
Internet: www.apraxia-kids.org
Description:
The Childhood Apraxia of Speech Association of North America (CASANA) is the only national nonprofit 501(c)(3) charity representing the needs of children with apraxia and their families. CASANA’s goal is to provide credible, reliable, and comprehensive information on apraxia of speech in children. Guided by a professional advisory board of experts in childhood apraxia of speech, CASANA offers information and resources based on the current prevailing professional literature and expert opinion. CASANA raises awareness and provides online services, educational training, workshops for professionals and parents, and research support. Educational DVDs are available on topics that include an introduction to childhood apraxia of speech, treatment strategies, and ways to help children with apraxia practice speaking at home and in the community.
Publications:
Apraxia-KIDS Newsletter
Frequency: published bimonthly
Type: other
CID - Central Institute for the Deaf
Executive Director: Robin Feder
Communication Director: Kim Readmond
Address: 825 South Taylor Avenue, St. Louis, MO, 63110
Voice: (314) 977-0243
TTY:
Fax: (314) 977-0033
E-mail: kreadmond@cid.edu
Internet: www.cid.edu
Description:
Founded in 1914, the Central Institute for the Deaf (CID) is a nonprofit organization that helps deaf children learn to speak, listen, and read with proficiency without the use of sign language. CID provides pediatric audiology; research collaborations; continuing education for professionals; and books, tests, and curricula used to
help deaf children throughout the world. CID has a proud history of training professionals and conducting pioneering educational, clinical, and biological research in hearing and deafness. CID is a financially independent affiliate of the Washington University School of Medicine.
Publications:
sound effects
Frequency: biannual
Type: newsletter
National Service Animal Center (NSAC)
President/CEO: Lawrence L. Norvell
Information and Resources: Michelle Cobey
Address: 875 124th Avenue, NE, #101 , Bellevue, WA, 98055
Voice: (425) 679-5500
Fax: (425) 679-5539
E-mail: info@deltasociety.org
Internet: www.deltasociety.org
Description:
The National Service Animal Resource Center, a department of the Delta Society, provides information through its website about the selection, training, stewardship, and roles of service dogs; referral to service-dog training programs and related resources; education for businesses, health care professionals, and the general public on service-dog issues; and self-advocacy on behalf of people with service dogs.
Council on Education of the Deaf (CED)
Executive Director: Karen Dilka
Address: Gallaudet University, P.O. Box 2094, 800 Florida Avenue, NE , Washington, DC, 20002
Voice: (859) 622-1043
Fax: (859) 622-4443
E-mail: cedoffice@councilondeafed.org
Internet: www.deafed.net
Description:
The Council on Education of the Deaf (CED) is a national professional organization responsible for setting and implementing policy related to education of deaf and hard-of-hearing students in schools. This includes setting certification and accreditation standards, certifying teachers, and evaluating university teacher preparation programs for accreditation approval. Established in 1930, CED has fostered cooperative networks in the field of education of deaf students. The CED board is composed of representatives from its seven member organizations, which are identified on the CED website. Professional online publications, application forms, and standards and manuals are available.
HEATH Resource Center at the National Youth Transitions Center (National Clearinghouse on Postsecondary Education for Individuals with Disabilities)
Address: 2134 G Street, NW , Washington, DC, 20052
E-mail: askheath@gwu.edu
Internet: www.heath.gwu.edu
Description:
The HEATH Resource Center at the National Youth Transitions
Center is an online clearinghouse on postsecondary education
for individuals with disabilities. Support from the HSC Foundation enables the clearinghouse to provide information exchange about educational support services, procedures, adaptations, and opportunities at American campuses, vocational-technical schools, and other postsecondary training institutions and centers.
Publications:
HEATH Resource Center Newsletter
Frequency: Quaterly
Type: newsletter
Hearing Education and Awareness for Rockers (H.E.A.R.)
Executive Director: Kathy Peck
Address: P.O. Box 460847, San Francisco, CA, 94146
Voice: (415) 409-EARS (3277)
E-mail: hear@hearnet.com
Internet: www.hearnet.com
Description:
Hearing Education and Awareness for Rockers (H.E.A.R.) is world-renowned for its efforts to educate the public about the dangers of excessive noise and to provide adequate hearing protection to musicians and music fans. H.E.A.R. promotes awareness about hearing damage by disseminating public service information and announcements to the media, producing hearing conservation “rocumentary” DVDs, and by establishing information and earplug tables at music events in the United States. H.E.A.R. programs include the H.E.A.R. Partner program in cities worldwide, custom musicians’ hearing protection programs, hearing screening clinics, and online hearing health and music resources. The professional/consumer hearing education conservation program "Listen Smart: Safely Handling the Power of Sound" is available as a DVD.
Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC)
Executive Director: Joseph J. McNulty
Address: 141 Middle Neck Road, Sands Point, NY, 11050
Voice: (516) 944-8900
TTY: (516) 944-8637
Fax: (516) 944-7302
E-mail: hkncinfo@hknc.org
Internet: www.hknc.org
Description:
The mission of the Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC) is to enable all individuals who are deaf-blind to live and work in the community of their choice. HKNC provides comprehensive vocational rehabilitation training and assistance with job and residential placements. Services in the field include 10 regional offices, more than 40 affiliated agencies, a National Training Team, the Older Adult Program, and the National Consortium on Deaf-Blindness. HKNC serves all adult Americans who are deaf-blind or have severe vision and hearing impairments and maintains a national registry of individuals who are deaf-blind. Professional fact sheets and brochures/pamphlets are available, with some materials in Braille.
American Neurotology Society (ANS)
President: Jeffrey T. Vrabec, M.D.
Public Information Contact: Kristen Bordignon, Administrator
Address: Administrative Office, 1980 Warson Road, Springfield, IL, 62704
Voice: (217) 638-0801
Fax: (217) 679-1677
E-mail: neurotology65@yahoo.com
Internet: www.americanneurotologysociety.com
Description:
The American Neurotology Society (ANS) is composed of physicians and audiologists devoted to the fields of neurotology and otology. The purpose of ANS is to exchange and disseminate information about the physiology, pathology, and clinical management of the sensorineural systems of audition and equilibrium, and to stimulate education and basic and clinical research relating to these systems. Holds two scientific meetings per year, which are open to anyone in the health sciences and particularly to individuals with major interest areas in hearing and balance. For meeting dates and locations, contact the ANS administrative office.
Publications:
Otology & Neurotology Journal
Frequency: ten times/year
Type: professional journal
Goodwill Industries International, Inc.
President/CEO: Jim Gibbons
Public Information Contact: Lauren Lawson, Media Relations Manager
Address: 15810 Indianola Drive, Rockville, MD, 20855
Voice: (301) 530-6500
Toll-free Voice: (800) 741-0197
TTY: (301) 530-9759
Fax: (301) 530-1516
E-mail: contactus@goodwill.org
Internet: www.goodwill.org
Description:
Goodwill Industries International, Inc., is a network of 183 community-based, independent agencies in the United States, Canada, and 14 other countries. Each organization serves people with workplace disabilities and disadvantages, including those who are deaf or hard-of-hearing or who have other communication disorders, by providing career training and employment services as well as job placement opportunities and post-employment support. To pay for its programs, Goodwill sells donated clothes and other household items in more than 2,300 retail stores, and online at www.shopgoodwill.com. A magazine and other publications are available, with some materials in Spanish.
Publications:
Working!
Frequency: quarterly
Type: magazine
International Hearing Society (IHS)
Executive Director: Kathleen Mennillo, M.B.A.
Public Information Contact: Amanda Ciccantelli
Address: 16880 Middlebelt Road, Suite 4, Livonia, MI, 48154
Voice: (734) 522-7200
Toll-free Voice: (800) 521-5247
Fax: (734) 522-0200
E-mail: info@ihsinfo.org
Internet: www.ihsinfo.org
Description:
The International Hearing Society (IHS) was formed in 1951 as a professional organization of hearing instrument specialists, the professionals who test hearing and select, fit, and dispense hearing instruments. The society conducts programs pertaining to competence qualification, education, and training, and promotes specialty-level accreditation. IHS sponsors a national toll-free Hearing Aid Helpline, which provides consumers with information and referrals to hearing instrument specialists. Holds annual convention and exhibition; contact IHS for date and location. Consumer fact sheets and brochures are available.
Stuttering Foundation of America (SFA)
President: Jane Fraser
Public Information Contact: Joan Warner, Coordinator
Address: 1805 Moriah Woods Boulevard, Suite 3, Memphis, TN, 38111-0749
Voice: (901) 761-0343
Toll-free Voice: (800) 992-9392
Fax: (901) 761-0484
E-mail: info@StutteringHelp.org
Internet: www.StutteringHelp.org
/ www.tartamudez.org
Description:
The Stuttering Foundation (SFA) provides resources, services, and support to individuals who stutter, their families, and professionals who serve them. SFA offers comprehensive, up-to-date information on stuttering through its publications, workshops, and conferences. In addition, SFA supports research into the causes of stuttering. The foundation’s worldwide referral list provides names of speechlanguage pathologists who specialize in stuttering treatment. SFA sponsors the annual National Stuttering Awareness Week the second week of May and supports International Stuttering Awareness Day, October 22. Many materials are free online and available in Spanish, French, and other languages. SFA also provides information through its Spanish-language website, www.tartamudez.org.
Publications:
Stuttering Foundation News
Frequency: quarterly
Type: newsletter
Stuttering Foundation Resource Guide
Frequency: updated bi-annually
Type: Resource guide for help on stuttering
Stuttering Foundation Resource Guide
Frequency: updated bi-annually
Type: Resource guide for help on stuttering
Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell)
Executive Director: Alexander T. Graham
Director of Communications and Public Affairs: Catherine Murphy
Address: 3417 Volta Place, NW, Washington, DC, 20007-2778
Voice: (202) 337-5220
Toll-free Voice: (866) 337-5220
TTY: (202) 337-5221
Fax: (202) 337-8314
E-mail: info@agbell.org
Internet: www.agbell.org
Description:
The Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) helps families, health care providers, and education professionals understand childhood hearing loss and the importance of early diagnosis and intervention. Through advocacy, education, research, and financial aid, AG Bell helps to ensure that every child and adult with hearing loss has the opportunity to listen, talk, and thrive. With chapters located throughout the United States and a network of international affiliates, AG Bell supports its mission: advocating independence through listening and talking!
Publications:
AG Bell Update
Frequency: weekly
Type: e-newsletter
The Volta Review
Frequency: biannual
Type: professional journal
The Volta Review
Frequency: biannual
Type: professional journal
The Triological Society
Executive Secretary: Patrick E. Brookhouser, M.D.
Administrator: Gail Binderup
Address: 13930 Gold Circle #103, Omaha, NE, 68144
Voice: (402) 346-5500
Fax: (402) 346-5300
E-mail: info@triological.org
Internet: www.triological.org
Description:
The Triological Society is an international honorary society of otolaryngologists/head and neck surgeons. The Society disseminates scientific information by presenting the latest basic science and clinical information at scientific meetings and through publication of its scientific journal, The Laryngoscope. The Society promotes research into the causes of and treatments for otolaryngic diseases by attracting promising physicians to scholarly otolaryngology research and supporting their development, providing financial support for the research efforts of young scientists, and promoting the highest standards in the field of otolaryngology-head and neck surgery.
Publications:
The Laryngoscope
Frequency: monthly
Type: newsmagazine
ENT Today
Frequency: monthly
Type: -- Select --
ENT Today
Frequency: monthly
Type: -- Select --
National Center for Health Statistics, Centers for Disease Control and Prevention (CDC)
Director: Edward J. Sondik, Ph.D.
Address: 3311 Toledo Road, Hyattsville, MD, 20782
Voice: (301) 458-4000
Toll-free Voice: (866) 441-NCHS (6247)
E-mail: cdcinfo@cdc.gov
Internet: www.cdc.gov/nchs
Description:
The National Center for Health Statistics (NCHS), part of the Centers for Disease Control and Prevention (CDC), compiles statistical information to help guide policies to improve the health of Americans. Holds a biennial data user conference; consult the NCHS website for date and location. NCHS disseminates data and statistics online and in print.
Publications:
Health, United States
Frequency: annual
Type: report on health trends of Americans
American Hearing Research Foundation (AHRF)
Executive Director: Sharon Parmet
Executive Director: Sharon Parmet
Address: 8 South Michigan Avenue, Suite 814, Chicago, IL, 60603-4539
Voice: (312) 726-9670
Fax: (312) 726-9695
E-mail: sparmet@american-hearing.org
Internet: www.american-hearing.org
Description:
The American Hearing Research Foundation (AHRF) is a nonprofit organization. Its purposes are to promote, conduct, and furnish financial assistance for medical research into the causes, prevention, and cure of deafness, impaired hearing, and balance disorders. See the AHRF website for additional information.
Publications:
Soundings
Frequency: triannual
Type: newsletter
Soundwaves
Frequency: published at least monthly
Type: e-newsletter
Soundwaves
Frequency: published at least monthly
Type: e-newsletter
National Captioning Institute (NCI)
President /CEO: Gene Chao
National Director of Sales and Marketing: Juan Mario Agudelo
Address: 3725 Concorde Parkway, #100, Chantilly, VA, 20151
Voice: (703) 917-7600
TTY: (703) 917-7600
Fax: (703) 917-9853
E-mail: mail@ncicap.org
Internet: www.ncicap.org
Description:
The National Captioning Institute (NCI) is a nonprofit organization that provides closed-captioning services to television networks, program producers, advertisers, producers of home entertainment videos, and other organizations in the government and private sectors. It was established in 1979, with the mission of ensuring that deaf and hard-of-hearing people have access to television’s entertainment and news through the technology of closed captioning. As part of its commitment to media access, NCI now offers Internet captioning as well as described video service for people who are blind or have low vision.
Agency for Healthcare Research and Quality (AHRQ)
Director: Carolyn Clancy, M.D.
Public Information Contact: Karen Migdail
Address: 540 Gaither Road, Rockville, MD, 20850
Voice: (301) 427-1855
Toll-free Voice: (800) 358-9295
Toll-free TTY: (888) 586-6340
E-mail: info@ahrq.gov
Internet: www.ahrq.gov
Description:
The Agency for Healthcare Research and Quality (AHRQ) provides practical health care information, research findings, and data to help consumers, health providers, health insurers, researchers, and policymakers make informed decisions about health care issues. Professional and consumer newsletters and bulletins, fact sheets, brochures/pamphlets, online publications, and professional reports are available. Some materials in Spanish are available.
Publications:
AHRQ
Frequency: biweekly
Type: e-newsletter
AHRQ Patient Safety/Health IT
Frequency: monthly
Type: e-newsletter
AHRQ Patient Safety/Health IT
Frequency: monthly
Type: e-newsletter
National Institute for Occupational Safety and Health (NIOSH)
Acting Director: Christine Branche, Ph.D.
Public Affairs Director: Fred Blosser
Address: 395 E Street, SW, Suite 9200, Patriots Plaza Building, Washington, DC, 20201
Toll-free Voice: (800) 232-4636
Fax: (202) 245-0664
E-mail: mrl1@cdc.gov
Internet: www.cdc.gov/niosh/
/ www.cdc.gov/niosh/programs/hlp/
Description:
Job-related hearing loss affects workers across many occupational sectors, including agriculture, construction, manufacturing and utilities, mining, and transportation. The National Institute for Occupational Safety and Health (NIOSH) conducts research in hearing loss and noise exposure surveillance, noise control engineering, hearing protection devices, hearing conservation programs, and other risk factors for occupational hearing loss. Together with the National Institute on Deafness and Other Communication Disorders, NIOSH supports the National Health and Nutrition Examination Survey, which collects a representative sample of the hearing health status of persons in the United States. NIOSH scientists participate in providing scientific bases for federal regulations, making authoritative recommendations to prevent occupational hearing loss, and developing acoustic standards. Professional and consumer information related to workplace noise and hearing safety are available in print and online.
Publications:
NIOSH eNews
Frequency: Monthly
Type: newsletter
Aphasia Hope Foundation (AHF)
Founder/Executive Director: Judi Stradinger
Public Information Contact: Sandy Caudell, Program Director
Address: P.O. Box 26304, Shawnee Mission, KS, 66225-6304
Voice: (913) 839-8083
E-mail: judistradinger@aphasiahope.org
E-mail: sandycaudell@aphasiahope.org
Internet: www.aphasiahope.org
Description:
The Aphasia Hope Foundation (AHF) is a nonprofit organization with a twofold mission: (1) to promote research into the cure and prevention of aphasia; and (2) to provide survivors of aphasia and their caregivers access to the best possible treatments, both physical and emotional, for living with this disease. AHF maintains an electronic bulletin board and a Web-based forum for posting questions to aphasia professionals and caregivers. AHF also provides information on ongoing research and legislation focusing on aphasia and offers an outlet through which persons with aphasia can share their stories.
American Academy of Facial Plastic and Reconstructive Surgery, Inc. (AAFPRS)
Executive Vice President: Stephen Duffy
Public Information Contact: Rita Chua Magness, Director of Publications and Marketing
Address: 310 South Henry Street, Alexandria, VA, 22314
Voice: (703) 299-9291
Fax: (703) 299-8898
E-mail: info@aafprs.org
Internet: www.aafprs.org
Description:
The American Academy of Facial Plastic and Reconstructive Surgery, Inc., (AAFPRS) is the largest association of facial plastic and reconstructive surgeons in the world. The academy’s bylaws provide that AAFPRS fellows be board-certified surgeons with training and experience in facial plastic surgery as well as fellows of the American College of Surgeons or the Royal College of Surgeons. The AAFPRS website provides visitors with information about facial plastic surgery and the names of AAFPRS fellows in their area. Professional and consumer publications are available, with some in Spanish.
Autism Society of America
President/COO: Scott Badesch
Address: 4340 East West Highway, Suite 350, Bethesda, MD, 20814
Voice: (301) 657-0881
Toll-free Voice: (800) 3-AUTISM (28-8476)
Fax: (301) 657-0869
E-mail: info@autism-society.org
Internet: www.autism-society.org
/ www.autismsource.org
Description:
The Autism Society is a national charitable organization dedicated to improving the lives of individuals on the autism spectrum, their families, and the professionals who work with them by providing current, reliable information about autism, the various options, approaches, and available
services. It provides toll-free phone support and a free online Information and Referral database (Autism Source) with information about local, state, and national programs and services. The Autism Society’s nationwide network of chapters is designed to provide information and support for
families in their local area. The Autism Society advocates at the local, state, and national levels to improve public policy, increase awareness, and promote research that leads to applied best practices to improve the quality of life for those living with autism throughout the life span.
Publications:
Autism Advocate
Frequency: quarterly
Type: magazine
National AMBUCS, Inc.
Executive Director: Joseph Copeland
Address: P.O. Box 5127, High Point, NC, 27262
Voice: (336) 852-0052
Fax: (336) 852-6830
E-mail: ambucs@ambucs.org
Internet: www.ambucs.org
/ www.facebook.com/NationalAMBUCS
Description:
The mission of National AMBUCS, Inc., is to create mobility and independence for people with disabilities. AMBUCS members are committed to performing valuable civic service and improving their communities. Some of our programs include home ramp building for people in wheel chairs and the funding of college scholarships for therapists. One of our most successful programs in recent years has been the distribution of the AmTryke® therapeutic tricycle.
Publications:
AMBUCS Leader
Frequency: monthly
Type: newsletter
AMBUCS Magazine
Frequency: quarterly
Type: magazine
AMBUCS Magazine
Frequency: quarterly
Type: magazine
Telecommunications for the Deaf and Hard of Hearing Inc. (TDI)
Executive Director: Claude L. Stout
Public Relations Director: James D. House
Address: 8630 Fenton Street, Suite 604, Silver Spring, MD, 20910-3803
Voice: (301) 589-3786
Voice: (301) 563-9112
TTY: (301) 589-3006
Fax: (301) 589-3797
E-mail: info@TDIforAccess.org
Internet: www.TDIforAccess.org
/ www.cepintdi.org
Description:
Telecommunications for the Deaf and Hard of Hearing, Inc., (TDI) is a consumer advocacy organization that provides leadership in achieving equal access to telecommunications, media, and information technologies for 36 million Americans who are deaf and hard-of-hearing.TDI administers the E911 Stakeholder Council, dedicated to increasing access to emergency services, as well as the Community Emergency Preparedness Information Network (www.cepintdi.org), a program funded by the Federal Emergency Management Agency, and administers biennial conferences in odd-numbered years.
Publications:
Blue Book
Frequency: annual
Type: directory
TDI eNotes
Frequency:
Type: periodic e-mail news updates
TDI eNotes
Frequency:
Type: periodic e-mail news updates
American Association for the Advancement of Science (AAAS), EntryPoint!
Director: Virginia Stern
Program Manager: Laureen Summers
Address: 1200 New York Avenue, NW, Washington, DC, 20005
Voice: (202) 326-6649
TTY: (202) 326-6649
Fax: (202) 371-9849
E-mail: lsummers@aaas.org
Internet: www.entrypoint.org
Description:
In 1975, the American Association for the Advancement of Science (AAAS) initiated the Project on Science, Technology, and Disability to improve entry and advancement in science, math, and engineering for people with disabilities. Through its program EntryPoint!, the project recruits undergraduate and graduate students with disabilities who are majoring in science, engineering, mathematics, computer science, and some business fields for paid, 10-week, summer opportunities at corporations, federal agencies, and university science laboratories. Interested students should visit the website and fill out a pre-application.
Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)
Executive Director: M. Nell Bailey
Administrative Assistant: Dawn Paulson
Address: 1700 North Moore Street, Suite 1540, Arlington, VA, 22209-1903
Voice: (703) 524-6686
TTY: (703) 524-6639
Fax: (703) 524-6630
E-mail: info@resna.org
Internet: www.resna.org
Description:
The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) is an interdisciplinary association for the advancement of rehabilitation and assistive technologies. Members range from rehabilitation professionals to providers and consumers. RESNA is dedicated to promoting the exchange of ideas and information for the advancement of assistive technology and rehabilitation engineering. Administers a certification program that is designed to instill quality assurance offered by professionals who support people with disabilities. RESNA holds an annual conference; contact RESNA for date and location. RESNA also administers a federal grant that provides technical assistance and information to the 50 states and U.S. territories. Professional books and audiovisuals are available. Materials in alternative formats are available upon request.
Publications:
Assistive Technology
Frequency: quarterly
Type: journal
RESNA NewsBriefs
Frequency: weekly
Type: other
RESNA NewsBriefs
Frequency: weekly
Type: other
American Speech-Language-Hearing Foundation (ASHFoundation)
Executive Director: Nancy J. Minghetti
Public Information Contact: Emily Diaz
Address: 2200 Research Boulevard, Rockville, MD, 20850
Voice: (301) 296-8703
E-mail: foundation@asha.org
Internet: www.ASHfoundation.org
Description:
The American Speech-Language-Hearing Foundation (ASHFoundation) supports the advancement of knowledge and the improvement of practice in serving children and adults with speech, language, or hearing disorders. ASHFoundation supports research, master’s and doctoral scholarships, and special projects that facilitate innovative directions in the field of communication sciences and disorders. This private organization is supported, in part, by the tax-deductible contributions of individuals, corporations, and organizations. See the website for information and funding guidelines.
House Research Institute
Chief Executive Officer: James D. Boswell
Manager of Media Relations: Kirsten A. Holguin
Address: 2100 West Third Street, Los Angeles, CA, 90057
Voice: (213) 483-4431
TTY: (213) 484-2642
Fax: (213) 483-8789
E-mail: webmaster@hei.org
E-mail: kholguin@hei.org
Internet: www.hei.org
Description:
The House Research Institute (formerly called the House Ear Institute) is a private, nonprofit 501(c)(3) organization dedicated to advancing hearing science through research and education to improve quality of life. Scientists are exploring the developing ear and ear diseases at the cellular and molecular level as well as investigating the complex ear-brain interaction. They also are working to improve hearing aids and auditory implants, clinical treatments, and intervention methods. Professional/consumer brochures, books, and audiovisuals are available.
American Speech-Language-Hearing Association (ASHA)
Executive Director: Arlene A. Pietranton, Ph.D., C.A.E.
Public Information Contact: ASHA Action Center
Address: 2200 Research Boulevard, Rockville, MD, 20850
Voice: (301) 296-5700
Toll-free Voice: (800) 638-8255
TTY: (301) 296-5650
E-mail: actioncenter@asha.org
Internet: www.asha.org
Description:
The mission of the American Speech-Language-Hearing Association (ASHA) is to promote the interests of and provide the highest quality services for professionals in audiology, speech-language pathology, and speech and hearing science, and to advocate for people with communication disabilities. Holds annual conference; contact ASHA for date and location. Professional brochures/pamphlets, journals, and professional/consumer online publications are available. Some materials are available in Spanish.
Publications:
American Journal of Audiology
Frequency: semiannual
Type: journal
American Journal of Speech-Language Pathology
Frequency: quarterly
Type: journal
American Journal of Speech-Language Pathology
Frequency: quarterly
Type: journal
Communication Service for the Deaf, Inc. (CSD)
Chief Executive Officer: Benjamin Soukup, L.L.D.
Public Information Contact: Rick Norris, Public Relations
Address: 102 North Krohn Place, Sioux Falls, SD, 57103
Voice: (605) 367-5760
Toll-free Voice: (800) 642-6410
TTY: (605) 367-5761
Toll-free TTY: (866) 273-3323
Fax: (605) 367-5958
E-mail: rnorris@c-s-d.org
Internet: www.c-s-d.org
Description:
Communication Service for the Deaf, Inc., (CSD) is a world leader in providing broad-based quality human service programs and telecommunication relay services for consumers who are deaf and hard-of-hearing. CSD has a staff of approximately 2,000 people in facilities across the United States. CSD endeavors to increase opportunities for greater independence, ensure communication accessibility, and promote public awareness of issues affecting everyone who is deaf or hard-of-hearing.
Publications:
SIGNews
Frequency: monthly
Type: newspaper for the signing community
Hard of Hearing Advocates (HOHA)
Director: Janet Keeler
Address: P.O. Box 1184 or 245 Prospect Street, Upton, MA, 01701
Voice: (508) 875-8662
E-mail: hoha@charter.net
Internet: www.hohadvocates.org
Description:
The goal of Hard of Hearing Advocates (HOHA) is to create and implement programs and solutions in areas in which people who are hard-of-hearing have undue problems. HOHA identifies specific problem areas, develops solutions, and seeks support to implement these solutions. The HOHA website has an online discussion board where hard-of-hearing people can discuss problems, solutions, and issues related to hearing loss.
Publications:
Hearing Awareness Kit
Frequency:
Type: available for hospitals, medical facilities, and consumers
Educational Audiology Association
Executive Administrator: Jesse Haynes
Educational Audiology Association:
Address: 3030 West 81st Avenue, Westminster, CO, 80031-4111
Voice: (800) 460-7322
Fax: (303) 458-0002
E-mail: admin@edaud.org
Internet: www.edaud.org
Description:
The Educational Audiology Association (EAA) is an international organization of audiologists and related professionals who deliver a full spectrum of hearing services to all children, particularly those in educational settings. The mission of EAA is to act as the primary resource and active advocate for its members through its publications and products, continuing educational activities, networking opportunities, and other professional endeavors. EAA was established
in 1984 to advocate for educational audiologists and the students they serve. The American Academy of Audiology and the American Speech-Language-Hearing Association recognize EAA as a related professional organization that facilitates direct communication between these organizations and others to provide a forum for EAA issues.
Publications:
Educational Audiology Review
Frequency: quarterly
Type: newsletter
Journal of Educational Audiology
Frequency: annually
Type: professional journal
Journal of Educational Audiology
Frequency: annually
Type: professional journal
HEAR NOW
Public Information Contact: Joanita Stelter
Address: 6700 Washington Avenue South, Eden Prairie, MN, 55344
Voice: 800-328-8602
Toll-free Voice: (800) 648-4327
Fax: (952) 947-4997
E-mail: nonprofit@starkey.com
Internet: www.starkeyhearingfoundation.org
Description:
HEAR NOW, a domestic program of the Starkey Hearing Foundation, provides hearing aids to people with no other resources to acquire hearing aids. HEAR NOW is a program of last resort; all other options must be used before service is awarded. Professional/consumer fact sheets and brochures are available.
TASH
Executive Director: Barb Trader
Public Information Contact: Tabitha Johnson-Graham, Membership Coordinator
Address: 1025 Vermont Avenue, 7th Floor, Washington, DC, 20005
Voice: (202) 263-5600
Fax: (202) 637-0138
E-mail: info@tash.org
Internet: www.tash.org
Description:
TASH is an international membership association of people with disabilities, their family members, other advocates, and professionals who work in the disability field. The association promotes the full participation of people with disabilities in integrated community settings that support the same quality of life available to people without disabilities. TASH sponsors an annual conference and topical workshops; see website for details. TASH also provides information and referral resources, renders targeted advocacy, and produces a magazine and quarterly journal.
Publications:
Research and Practice for Persons with Severe Disabilities
Frequency: quarterly
Type: professional scientific journal
TASH Connections
Frequency: bimonthly
Type: news magazine
TASH Connections
Frequency: bimonthly
Type: news magazine
Sertoma, Inc.
Executive Director: Stephen Murphy
Address: 1912 East Meyer Boulevard, Kansas City, MO, 64132-1174
Voice: (816) 333-8300
Toll-free Voice: (800) 593-5646
TTY: (816) 333-8300
Fax: (816) 333-4320
E-mail: infosertoma@sertomahq.org
Internet: www.sertoma.org
Description:
Sertoma International (SERvice TO MAnkind) is a volunteer service organization of 18,000 members in 650 clubs across North America. Its primary focus is communication disorders, but its clubs also sponsor projects focusing on national heritage, youth, and other community needs. Sertoma offers scholarships for graduate study in audiology and speech pathology and for undergraduate students with hearing loss who are pursuing degrees in any field. Holds annual convention; contact Sertoma for date and location. Professional online publications are available.
Hearing Loss Association of America
Executive Director: Brenda Battat, M.A.
Address: 7910 Woodmont Avenue, Suite 1200, Bethesda, MD, 20814
Voice: (301) 657-2248
TTY: (301) 657-2249
Fax: (301) 913-9413
E-mail: info@hearingloss.org
Internet: www.hearingloss.org
Description:
The Hearing Loss Association of America (HLAA) is a nonprofit organization with a mission to open the world of communication to people with hearing loss through education, information, support, and advocacy. HLAA provides assistance and resources for people with hearing loss and their families to learn how to adjust to living with hearing loss. HLAA is working to eradicate the stigma associated with hearing loss and raise public awareness about the need for prevention and the importance of regular hearing screenings throughout life. Its national support network includes an office in the District of Columbia area, 14 state organizations, and 200 local chapters. HLAA also holds annual conventions for people with hearing loss and professionals; see website for details.
Publications:
Hearing Loss Magazine
Frequency: bimonthly
Type: magazine
John Tracy Clinic
President: Barbara F. Hecht, Ph.D.
Address: 806 West Adams Boulevard, Los Angeles, CA, 90007
Voice: (213) 748-5481
Toll-free Voice: (800) 522-4582
TTY: (213) 747-2924
Fax: (213) 749-1651
E-mail: bhecht@jtc.org
Internet: www.jtc.org
Description:
The John Tracy Clinic provides free services to parents of children, ages birth to 5 years, with hearing loss. The clinic has more than 60 years of experience in early intervention and the spoken language option. Correspondence courses are available worldwide. Three-week summer sessions are offered. A master’s and credential program in teacher education is offered both onsite and online. A professional/consumer newsletter and fact sheets, brochures/ pamphlets, and online publications are available. Most materials are available in Spanish.
Publications:
John Tracy Clinic Bulletin
Frequency: semiannual
Type: newsletter
Autism Speaks
President: Mark Roithmayr
Executive Vice President, Programs and Services: Peter Bell
Address: 2 Park Avenue, 11th Floor, New York, NY, 10016
Voice: (212) 252-8584
Voice: (609) 228-7346
Fax: (212) 252-8676
E-mail: contactus@autismspeaks.org
Internet: www.autismspeaks.org
Description:
The goal of Autism Speaks is to change the future for all who struggle with autism spectrum disorders. This organization is dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; raising public awareness about autism and its effects on individuals, families, and society; and bringing hope to all who deal with the hardships of autism.
Publications:
e-Speaks
Frequency: weekly
Type: newsletter
Speaking Out
Frequency: quarterly
Type: newsletter
Speaking Out
Frequency: quarterly
Type: newsletter
Testing, Evaluation, and Certification Unit, Inc. (TECUnit )
President: Shellie Burrow
Public Information Contact: Michael Burrow, Office Manager
Address: 1850 South Edwards Lane, Heber City, UT, 84118
Toll-free Voice: (800) 523-0964
Fax: (435) 654-3261
E-mail: info@tecunit.org
Internet: www.TECUnit.org
Description:
The Testing, Evaluation, and Certification Unit, Inc., (TECUnit) is the national certifying body for transliterators who work primarily between spoken and cued English. TECUnit administers the Cued Language Transliterator National Certification Examination and also has developed an assessment tool for use by state agencies. TECUnit also administers standardized tests designed to assess expressive and receptive cueing proficiency. Ultimately, TECUnit is responsible for establishing, maintaining, and promulgating national standards for the profession of cued language transliteration. Professional fact sheets and online publications are available.
Office of Disability Employment Policy (ODEP), U.S. Dept. of Labor
Assistant Secretary: Kathy Martinez
Supervisor, Policy Communication and Outreach: Barbara Haight
Address: Suite S1303, 200 Constitution Avenue, NW, Washington, DC, 20210
Voice: (202) 693-7880
Toll-free Voice: (866) 633-7365
TTY: (202) 693-7881
Fax: (202) 693-7888
E-mail: odep@dol.gov
Internet: www.dol.gov/odep
Description:
The Department of Labor’s Office of Disability Employment Policy (ODEP) provides national leadership by developing and influencing disability and related employment policy, as well as practices that affect the employment of people with disabilities, including communication disorders.
Publications:
Business Sense
Frequency: monthly
Type: newsletter
The Voice Foundation
Chairman: Robert T. Sataloff, M.D., D.M.A.
Executive Director: Maria Russo, MM Voice
Address: 1721 Pine Street, Philadelphia, PA, 19103
Voice: (215) 735-7999
Fax: (215) 735-9293
E-mail: office@voicefoundation.org
Internet: www.voicefoundation.org
Description:
The Voice Foundation is the world’s oldest and leading organization dedicated to voice medicine, science, and education. This nonprofit organization is committed to funding research, sponsoring an annual international symposium, publishing professional and scientific publications and audiovisual materials, and disseminating knowledge internationally. Holds annual symposium (Care of the Professional Voice) in Philadelphia, usually the first week of June; contact the Voice Foundation for date and location.
Publications:
Journal of Voice
Frequency: quarterly
Type: journals
The Voice Foundation Newsletter
Frequency: quarterly
Type:
The Voice Foundation Newsletter
Frequency: quarterly
Type:
United States Society for Augmentative and Alternative Communication (USSAAC)
President: Patricia Ourand, M.S., CCC-SLP
Public Information Contact: Barbara Figueiredo, USSAAC Office Manager
Address: P.O. Box 1195, Burlingame, CA, 94011
Voice: (928) 585-8525
Fax: (410) 296-5710
E-mail: info@ussaac.org
Internet: www.USSAAC.org
Description:
The purposes of the United States Society for Augmentative and Alternative Communication (USSAAC) are to enhance the communication effectiveness of people who can benefit from augmentative and alternative communication and to support the goals of the International Society for Augmentative and Alternative Communication. USSAAC supports individuals in their right to communicate and participate fully in society; promotes public awareness; influences national and state public policy and legislation; disseminates legislative, regulatory, and funding information; facilitates high-quality service delivery; and promotes transdisciplinary professional education. Sponsors a conference every two years; visit the USSAAC website for date and location.
Publications:
SpeakUp
Frequency: triannual
Type: magazine
Monell Chemical Senses Center
Director/President: Gary K. Beauchamp, Ph.D.
Public Information Contact: Leslie Stein, Ph.D.
Address: 3500 Market Street, Philadelphia, PA, 19104
Voice: (267) 519-4700
Fax: (215) 573-0909
E-mail: mcsc@monell.org
Internet: www.monell.org
Description:
The Monell Chemical Senses Center (Monell) is the world’s only nonprofit basic research institute devoted to the study of taste, smell, and chemical irritation. Its mission is to advance knowledge of the mechanisms and functions of the chemical senses to benefit human health and well-being. Monell’s interdisciplinary research relates to significant public health and quality-of-life issues across the lifespan, including obesity, diabetes, hypertension, pediatric health, occupational safety, and environmental issues. It has an education and training program for postdoctoral scientists, senior scientists, and graduate students. Monell is a resource for information about the chemical senses for the public, medical professionals, the media, and academics. A newsletter is available.
Publications:
The Monell Connection
Frequency: semiannual
Type: newsletter
Global and Regional Asperger Syndrome Partnership (GRASP)
Executive Director: Michael John Carley
Deputy Director: Alison Alpert
Address: 666 Broadway, Suite 830, New York, NY, 10012
Voice: (888) 474-7277
Fax: (888) 474-7277
E-mail: info@grasp.org
Internet: www.grasp.org
Description:
The Global and Regional Asperger Syndrome Partnership (GRASP) is the largest peer-run organization in the world serving individuals diagnosed on the autism spectrum. GRASP operates a support and advocacy network, conducts educational outreach, and serves as an informational clearinghouse on autism-related issues. Its bylaws stipulate that the executive director, all members of its advisory board, and half of its board of directors must be on the autism spectrum. GRASP has many professional affiliations and works with parents’ organizations, universities, service agencies, research institutions, autism organizations, and advocacy organizations. GRASP offers 25 peer-run regional support groups and many online. Visitors to the website can subscribe to an e-list to stay informed of new educational articles.
Publications:
GRASP Newsletter
Frequency: monthly
Type: newsletter
Advocure NF2, Inc.
Chairperson: Marie Drew
Treasurer: Cynthia Henrion
Address: P.O. Box 4118, Clearwater, FL, 33758-4118
E-mail: contact@advocurenf2.org
Internet: www.advocurenf2.org
Description:
Neurofibromatosis Type II (NF2) is a rare, genetic disease that causes tumors to grow throughout the brain and spinal cord, threatening hearing, vision, mobility, and even basic life functions such as swallowing. Advocure NF2, Inc., is a 501(c)(3) public charity and liaison group that advocates for the NF2 Crew (an online-based support community for patients and others) and the NF2 international community. Advocure NF2, Inc., monitors research and drug developments worldwide and works to expedite systemic therapy that may treat and possibly even cure NF2. Its website offers
information on understanding and living with NF2, research, and other resources. A quarterly newsletter is available online.
Publications:
NF2 Compass
Frequency: quarterly
Type: newsletter
American Board of Audiology®
Managing Director: Torryn P. Brazell, C.M.P., C.A.E.
Address: 11730 Plaza America Drive, Suite 300, Reston, VA, 20190
Toll-free Voice: (800) 881-5410
Fax: (703) 790-8631
E-mail: aba@audiology.org
Internet: www.americanboardofaudiology.org
Description:
The American Board of Audiology (ABA), an autonomous organization, is dedicated to improving audiologic services to the public by promulgating promoting universally recognized standards in professional practice. The ABA encourages audiologists to exceed these prescribed standards, thereby promoting and encouraging a high level of professional development and ethical practice. The ABA offers two specialty certifications in cochlear implants and pediatric audiology.
Publications:
ABA Sounding Board
Frequency: quarterly professional
Type: newsletter
U.S. Access Board
Executive Director: David Capozzi
Public Affairs Coordinator: Dave Yanchulis
Address: 1331 F Street, NW, Suite 1000, Washington, DC, 20004-1111
Voice: (202) 272-0080
Toll-free Voice: (800) 872-2253
TTY: (202) 272-0082
Toll-free TTY: (800) 993-2822
Fax: (202) 272-0081
E-mail: info@access-board.gov
Internet: www.access-board.gov
Description:
The U.S. Access Board is an independent federal agency that promotes equality for people with disabilities through leadership in accessible design. The board develops guidelines and standards under the Americans with Disabilities Act (ADA) and other federal laws that address access to the built environment, transportation, communication, and information technology. In addition, the board enforces accessibility standards covering federally funded facilities and promotes accessibility through public outreach, technical assistance, training, published guidance, and research. Copies of all board guidelines and standards are available free from the board, including through its website, in a variety of formats. The board also publishes a host of guidance materials on its design requirements and other aspects of accessible design for professional, consumer, and general audiences.
Dysphagia Research Society
President: Rosemary Martino, Ph.D., M.Sc., M.A. (until June 30, 2012)
Association Manager: Angela Davis, C.A.E.
Address: 4550 Post Oak Place, Suite 342, Houston, TX, 77027
Voice: (713) 965-0566
Fax: (713) 960-0488
E-mail: drs@meetingmanagers.com
Internet: www.dysphagiaresearch.org
Description:
The Dysphagia Research Society (DRS) was established to serve researchers and clinicians from different areas of inquiry who share a research interest in normal and disordered swallowing and related functions. Its purposes are to enhance and encourage research in these areas, attract new investigators to the field and encourage interdisciplinary research, promote the dissemination of knowledge, provide a multidisciplinary forum for presenting research, and foster new methodologies and instrumentation in dysphagia research and its clinical applications. DRS holds an annual conference; see website for details. DRS also publishes a professional journal and a newsletter biannually.
Publications:
Dysphagia
Frequency: quarterly
Type: journal
AARP
Chief Executive Officer: William D. Novelli
Manager, Media Services: Steve Hahn
Address: 601 E Street, NW, Washington, DC, 20049
Toll-free Voice: (888) 687-2277
TTY: (202) 434-6561
Toll-free TTY: (877) 434-7598
Fax: (202) 434-6499
E-mail: media@aarp.org
Internet: www.aarp.org
Description:
AARP is a nonprofit, nonpartisan membership organization that helps people who are ages 50 and older to have independence, choice, and control in ways that are beneficial and affordable to them and society as a whole. The AARP Foundation is an affiliated charity that provides security, protection, and empowerment to older persons in need with support from thousands of volunteers, donors, and sponsors. AARP has offices in all 50 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands.
Publications:
AARP Bulletin
Frequency: monthly
Type: newsletter
AARP Segunda Juventud
Frequency: bimonthly
Type: Spanish-language magazine
AARP Segunda Juventud
Frequency: bimonthly
Type: Spanish-language magazine
Academy of Doctors of Audiology (ADA)
President: Charles Stone, Au.D.
Executive Director: Stephanie Czuhajewski
Address: 1020 Monarch Street, Suite 300 B, Lexington, KY, 40513
Toll-free Voice: (866) 493-5544
Fax: (859) 321-1595
E-mail: info@audiologist.org
Internet: www.audiologist.org
Description:
The Academy of Doctors of Audiology (ADA), founded in 1976, provides valuable resources to the private practitioner in audiology and to other audiology professionals who have responsibility for quality patient care and business operations. Member benefits include a quarterly business-focused publication, online forums, and various practice management resources. ADA strives to be the leader in professional development, high ethical standards, career enhancement, practice improvement, and student outreach.
Publications:
Audiology Practices
Frequency: quarterly
Type: professional magazine
Acoustic Neuroma Association (ANA)
Executive Director: Judy B. Vitucci
Address: 600 Peachtree Parkway, Suite 108, Cumming, GA, 30041
Voice: (770) 205-8211
Toll-free Voice: (877) 200-8211
Fax: (877) 202-0239
E-mail: info@anausa.org
Internet: www.ANAUSA.org
Description:
The Acoustic Neuroma Association (ANA) is a patient-focused organization that provides information and support to those affected by acoustic neuroma. An acoustic neuroma, also called a vestibular schwannoma, is a slow-growing, benign tumor that develops on the eighth cranial nerve: early symptoms include hearing loss, balance problems, and tinnitus. ANA publishes a quarterly newsletter and other consumer information, organizes local support groups, promotes research, and maintains an interactive website. Also holds a national symposium; contact ANA for date and location.
Publications:
NOTES
Frequency: quarterly
Type: consumer newsletter
ADARA: Professional Networking for Excellence in Service Delivery with Individuals Who Are Deaf or Hard of Hearing
President: Timothy Beatty
Public Information Contact: Sherri Gallagher, National Office Coordinator
Address: P.O. Box 480, Myersville, MD, 21773
Voice: (301) 293-8969
TTY: (301) 293-8969
Fax: (301) 293-9698
E-mail: adaraorg@comcast.net
Internet: www.adara.org
Description:
The mission of ADARA is to facilitate professional development, networking opportunities, and public policies for a multidisciplinary membership of professionals who provide personal services to individuals who are deaf, hard-of-hearing, late-deafened, and deaf-blind. Holds biannual convention; contact ADARA for date and location. A professional/consumer newsletter/bulletin and professional online publications are available.
Publications:
JADARA
Frequency: quarterly
Type: journal
The Update
Frequency: quarterly
Type: professional newsletter
The Update
Frequency: quarterly
Type: professional newsletter
American Academy of Otolaryngology--Head and Neck Surgery (AAO-HNS)
Executive Vice President: David R. Nielsen, M.D.
Public Information Contact: Jeanne McIntyre, Director of Communications
Address: 1650 Diagonal Road, Alexandria, VA, 22314-2857
Voice: (703) 836-4444
Fax: (703) 683-5100
E-mail: webmaster@entnet.org
Internet: www.entnet.org
Description:
The nonprofit American Academy of Otolaryngology—Head and Neck Surgery (AAO-HNS) strives to unite, serve, and represent the interests of ear, nose, and throat specialists and their patients to the public, government, other medical specialists, and related organizations. AAO-HNS provides leaflets and geographic lists of physicians to the public at no charge. Holds annual meeting; contact AAO-HNS for date and location. AAO-HNS provides a professional bulletin, journal, directory, books, and other materials. Professional/consumer publications are available online and in print, with some in Spanish.
Publications:
The Bulletin
Frequency: monthly
Type: professional magazine
Otolaryngology--Head and Neck Surgery
Frequency: monthly
Type: scientific journal
Otolaryngology--Head and Neck Surgery
Frequency: monthly
Type: scientific journal
American Association of the Deaf-Blind (AADB)
Executive Director: Jamie Pope
Address: 8630 Fenton Street, Suite 121, Silver Spring, MD, 20910
Voice: (301) 495-4403
TTY: (301) 495-4402
Fax: (301) 495-4404
E-mail: aadb-info@aadb.org
Internet: www.aadb.org
Description:
The American Association of the Deaf-Blind (AADB) is a national consumer organization of, for, and by people who have dual hearing and vision loss. The mission of AADB is to ensure that all deaf-blind persons achieve their maximum potential through increased independence, productivity, and integration into the community. Holds biennial conference; contact AADB for date and location.
Publications:
AADB E-News
Frequency: free
Type: e-newsletter for the public
The Deaf-Blind American
Frequency: quarterly magazine
Type: for members, available in large print and Braille, on disk, and by e-mail
The Deaf-Blind American
Frequency: quarterly magazine
Type: for members, available in large print and Braille, on disk, and by e-mail
American Broncho-Esophagological Association (ABEA)
President: Andrew Blitzer, M.D., D.D.S.
Public Information Contact: Gregory Grillone, M.D.
Address: Boston Medical Center, FGH Bldg., 820 Harrison Avenue, Boston, MA, 02118-2308
Voice: (617) 638-7934
E-mail: gregory.grillone@bmc.org
Internet: www.abea.net
Description:
The American Broncho-Esophagological Association (ABEA) is an association of physicians with interest in the function and diseases of the upper aerodigestive tract and the relevant applications of endoscopy. The goals of ABEA are to educate and update physicians in evaluating and managing aerodigestive tract disorders; stimulate and support basic and clinical research; advocate and support endoscopy training in residency and fellowship programs; and provide information useful to patients, industry, scientists, physicians, and other health care professionals at a national otolaryngology meeting.
American Cleft Palate-Craniofacial Association (ACPA) and Cleft Palate Foundation (CPF)
Executive Director: Nancy C. Smythe
Public Information Contact: Lisa Gist, Director of Family Services
Address: 1504 East Franklin Street, Suite 102, Chapel Hill, NC, 27514
Voice: (919) 933-9044
Toll-free Voice: (800) 24-CLEFT (2-5338)
Fax: (919) 933-9604
E-mail: info@cleftline.org
Internet: www.cleftline.org
/ www.acpa-cpf.org
Description:
The American Cleft Palate-Craniofacial Association (ACPA) is an international nonprofit association of more than 2,500 health care professionals who are involved in the treatment and research of cleft lip, cleft palate, and other craniofacial abnormalities. ACPA optimizes the interdisciplinary care of persons affected by craniofacial abnormalities. The Cleft Palate Foundation (CPF), which is the public service arm of ACPA, educates and assists the public regarding craniofacial anomalies and encourages research in the field. Holds annual convention; contact ACPA or CPF for date and location. A directory and professional/consumer fact sheets and brochures are available, with some in Spanish.
Publications:
Cleft Palate-Craniofacial Journal
Frequency: bimonthly
Type: professional journal
American Laryngological Association (ALA)
President: Marvin P. Fried, M.D.
Administrator: Maxine Cunningham
Address: P.O. Box 128186, Nashville, TN, 37232
Voice: (615) 343-0429
Voice: (615) 812-6170
Fax: (615) 322-9102
E-mail: alahns@comcast.net
E-mail: maxine@alahns.org
Internet: www.alahns.org
Description:
The mission of the American Laryngological Association (ALA) is to promote education and research and to disseminate important new scientific information relative to laryngology, which is the study of basic science, evaluation, and management of disorders relating to the larynx. ALA strives to accomplish this mission by promoting and presenting the latest scientific discoveries, publishing peer-reviewed reports, establishing funding sources for pilot research studies that facilitate subsequent funding by the National Institutes of Health, and sponsoring educational seminars and courses as well as public service announcements.
Publications:
The Laryngoscope
Frequency: monthly
Type: professional journal
American Society for Deaf Children (ASDC)
Director of Advocacy: Cheri Dowling
:
Address: 800 Florida Avenue, NE, #2047, Washington, DC, 20002-3695
Voice: (800) 942-2732
Toll-free Voice: (800) 942-2732
TTY:
Fax: (410) 795-0965
E-mail: asdc@deafchildren.org
Internet: www.deafchildren.org
Description:
The American Society for Deaf Children (ASDC) supports and educates families of deaf and hard-of-hearing children, and advocates for high-quality programs and services. Holds convention every two years; contact ASDC for date and location. Consumer brochures and a magazine are available.
Publications:
The Endeavor
Frequency: quarterly
Type: consumer magazine
Association for Chemoreception Sciences (AChemS)
Executive Director: Tisha Kehn
Address: 5841 Cedar Lake Road, Suite 204, Minneapolis, MN, 55416
Voice: (952) 646-2035
Fax: (952) 545-6073
E-mail: info@achems.org
Internet: www.achems.org
Description:
The Association for Chemoreception Sciences (AChemS) is an international association that advances understanding of the senses of taste and smell. It encourages basic, clinical, and applied research in the chemical senses (gustation, olfaction, and trigeminal sensation); promotes an appreciation of chemosensory research; represents the interests of the chemosensory research community; and serves as a resource for those requiring chemosensory expertise. Holds annual meeting; contact AChemS for date and location. A professional newsletter and directory are available.
Publications:
Chemical Senses
Frequency: published nine times a year,
Type: professional journal
Association of Academic Physiatrists (AAP)
Executive Director: Lawrence C. Pencak, M.A.
Public Information Contact: Vincent A. Fields, Sr., M.B.A., Deputy Director
Address: 1106 North Charles Street, Suite 201, Baltimore, MD, 21201
Voice: (410) 637-8300
Fax: (410) 637-8399
E-mail: lpencak@physiatry.org
E-mail: vfields@physiatry.org
Internet: www.physiatry.org
Description:
The mission of the Association of Academic Physiatrists (AAP) is to promote excellence in the education, research, and practice of physical medicine and rehabilitation (PM&R) in the academic arena. To accomplish this, AAP facilitates the exchange of ideas and information on teaching the art and science of PM&R. AAP promotes the dissemination of information and academic life skills to future physicians who will be practicing PM&R and encourages information exchange with other fields of medicine. Holds annual conference; contact AAP for date and location. A professional newsletter, journal, brochures, and a residency training directory are available.
Publications:
AAP Newsletter
Frequency: monthly
Type: professional newsletter
American Journal of Physical Medicine and Rehabilitation
Frequency: monthly
Type: journal
American Journal of Physical Medicine and Rehabilitation
Frequency: monthly
Type: journal
Association of University Centers on Disabilities (AUCD)
Executive Director: George Jesien, Ph.D.
Address: 1010 Wayne Avenue, Suite 920, Silver Spring, MD, 20910
Voice: (301) 588-8252
Fax: (301) 588-2842
E-mail: info@aucd.org
Internet: www.aucd.org
Description:
The Association of University Centers on Disabilities (AUCD) is the national association representing University Centers for Excellence in Developmental Disabilities, Maternal and Child Health Leadership Education in Neurodevelopmental Disabilities Programs, and Developmental Disabilities Research Centers. Its mission is to help member centers by advancing policy and practice for and with people with developmental and other disabilities, their families, and communities. Contact AUCD for date and location of annual meeting. A professional newsletter/bulletin, proceedings, and fact sheets are available.
Publications:
AUCDigest
Frequency: monthly
Type: newsletter
InBrief
Frequency: weekly
Type: legislative news update
InBrief
Frequency: weekly
Type: legislative news update
AUDIENT
Program Manager: Sharon Kerpel
Public Information Contacts: Sharon Kerpel, Casey Tart, and Marsha Rastatter
Address: 221 Yale Ave N, Suite 450, Seattle, WA, 98109
Voice: (206) 838-7194
Toll-free Voice: (877) AUDIENT (283-4368)
Fax: (206) 838-7195
E-mail: info@audientalliance.org
Internet: www.audientalliance.org
Description:
AUDIENT is a nationwide program that helps low-income individuals obtain hearing aids at a reduced cost. Program fees include either one or two new digital hearing aids, the fitting, and three follow-up visits. The cost to the patient for one hearing aid is approximately $760 to $1,400; for two hearing aids, the cost is approximately $1,290 to $2,400.
Audiology and Speech Pathology Services, U.S. Department of Veterans Affairs (VA)
Director: Lucille B. Beck, Ph.D.
Public Information Contact: Cathy Greener
Address: VA Medical Center, 50 Irving Street, NW, Washington, DC, 20422
Voice: (202) 745-8578
Voice: (202) 745-8270
Fax: (202) 745-8579
E-mail: cathy.greener@va.gov
Internet: www.washingtondc.va.gov/departments/audiology.asp
Description:
Audiology and Speech Pathology Services of the U.S. Department of Veterans Affairs (VA) provides high-quality, comprehensive, state-of-the-art clinical services to eligible veterans. Diagnostic and treatment services are offered in a timely manner and in an environment that fosters respect, communication, and compassion. Audiology services include evaluation and treatment of hearing loss and tinnitus, along with assessment of balance problems and, in some locations, balance rehabilitation. Diagnostic auditory and vestibular assessment, provision of hearing aids and assistive and alerting devices, cochlear implant management, and auditory rehabilitation also are available. Speech pathology services include evaluation and treatment of speech, language, voice, and swallowing disorders.
BEGINNINGS for Parents of Children Who Are Deaf or Hard of Hearing, Inc. (BEGINNINGS)
Executive Director: Joni Alberg, Ph.D.
Public Information Contact: Judy Werbicki, Administrative Assistant
Address: 302 Jefferson Street, Suite 110, Raleigh, NC, 27605
Voice: (919) 850-2746
Toll-free Voice: (800) 541-4327 (In-state only)
TTY: (919) 850-2746
Fax: (919) 850-2804
E-mail: info@ncbegin.org
Internet: www.ncbegin.org
Description:
BEGINNINGS for Parents of Children Who Are Deaf or Hard of Hearing, Inc., (BEGINNINGS) provides support and information in an impartial manner to parents and professionals dealing with deaf and hard-of-hearing issues in children. BEGINNINGS also provides impartial information on communication options, placement, and educational programs; workshops for professional personnel who work with children who are deaf and hard-of-hearing; and advocacy and support for young people. Fact sheets, brochures, a parent manual, and reports are available, with some materials in Spanish.
Better Hearing Institute (BHI)
President: Cathy Henderson Jones
Public Information Contact: Sergei Kochkin, Ph.D., Executive Director
Address: 1444 I Street, Suite 700, Washington, DC, 20005
Voice: (202) 449-1100
Toll-free Voice: (800) EAR-WELL (327-9355)
Fax: (202) 216-9646
E-mail: mail@betterhearing.org
Internet: www.betterhearing.org
Description:
Founded in 1973, the Better Hearing Institute (BHI) conducts research and engages in hearing health education with the goal of helping people with hearing loss benefit from proper treatment. BHI maintains a “Hearing Helpline” telephone service that provides information on hearing loss, sources of assistance, and other hearing help to callers anywhere in the United States and Canada. BHI also publishes periodic studies of the hearing-impaired population based on its survey of 80,000 households. BHI receives funding from the hearing aid industry to support its professional/consumer outreach efforts.
Publications:
MarkeTrak
Frequency: published periodically
Type: reports based on survey data
Your Guide to Better Hearing, A Guide to Your Child's Hearing Health, and Your Guide to Hearing Aids
Frequency:
Type: consumer information brochures
Your Guide to Better Hearing, A Guide to Your Child's Hearing Health, and Your Guide to Hearing Aids
Frequency:
Type: consumer information brochures
Birth Defect Research for Children, Inc. (BDRC)
Executive Director: Betty Mekdeci
Address: 976 Lake Baldwin Lane, Suite 104, Orlando, FL, 32814
Voice: (407) 895-0802
E-mail: staff@birthdefects.org
Internet: www.birthdefects.org
Description:
Birth Defect Research for Children, Inc., (BDRC) provides parents and expectant parents with information about specific birth defects and their causes and treatments, support group referrals, and parent-matching services. BDRC also provides information about environmental exposures that may be associated with birth defects. To study these exposures further, BDRC sponsors the National Birth Defect Registry, an online research project that collects data on birth defects and prenatal/preconception exposures of both parents. A consumer newsletter, fact sheets, and other publications are available.
Publications:
Birth Defect News
Frequency: monthly
Type: e-mail newsletter
Center for Hearing and Communication
Executive Director: Laurie Hanin, Ph.D.
Director, Audiology Services: Ellen Lafargue
Director, Communication Services: Lois Kam Heymann
Address: 50 Broadway, New York, NY, 10004
Voice: (917) 305-7700
TTY: (917) 305-7999
Fax: (917) 305-7888
Internet: www.CHChearing.org
Description:
The nonprofit Center for Hearing and Communication works to improve the quality of life for people with all degrees of hearing loss and to offer comprehensive services regardless of age or mode of communication. State-of-the-art services include hearing assessment, hearing aid fitting and dispensing, speech-language and auditory evaluation and therapy, otology, cochlear implant evaluation and training, assistive listening devices and FM system counseling, tinnitus and hyperacusis therapy, and evaluation/treatment of children with auditory processing disorder (APD) and other listening challenges. Holds quarterly cochlear implant support group, weekly group assistive device demonstrations, and other meetings. Print and online publications are available.
Center on Human Policy (CHP)
Director: Steven J. Taylor, Ph.D.
Information Coordinator: Rachael A. Zubal-Ruggieri
Address: Syracuse University, School of Education, 805 South Crouse Avenue, Syracuse, NY, 13244-2280
Voice: (315) 443-3851
Toll-free Voice: (800) 894-0826
Fax: (315) 443-4338
E-mail: http://thechp@syr.edu
Internet: thechp.syr.edu
/ disabilitystudies.syr.edu
Description:
The Center on Human Policy (CHP) is a Syracuse University-based policy, research, and advocacy organization involved in the national movement to ensure the rights of people with disabilities. CHP is involved in a variety of activities, including policy studies, research, information and referral, training and consultation, and information dissemination. A range of professional/consumer publications is available. The Center on Human Policy, Law, and Disability Studies (CHPLDS) is an expansion of CHP. CHPLDS is a network of academic programs, centers, student organizations, and affiliated faculty that—through research, teaching, and advocacy—promotes and protects the rights of people with disabilities and examines disability as an aspect of diversity in society.
Children of Deaf Adults International, Inc. (CODA)
President: Carmel Batson
National CODA Outreach Contact: Thomas Bull
Address: P.O. Box 30715, Santa Barbara, CA, 93130
Voice: (805) 682-0997
TTY: (805) 682-0997
Internet: www.coda-international.org
Description:
Children of Deaf Adults International, Inc., (CODA) promotes family awareness and individual growth in hearing children of deaf parents. CODA provides educational opportunities, promotes self-help, organizes advocacy efforts, and acts as a resource for the membership and various communities. Holds annual conference; contact CODA for date and location. A professional/consumer newsletter, directory, fact sheets, brochures, and books are available.
Publications:
The CODA Connection
Frequency: quarterly
Type: newsletter
Clearinghouse on Disability Information, Office of Special Education and Rehabilitative Services (OSERS)
Director of Communications/Customer Service Team: James Button
Public Information Contact: Carolyn Corlett
Address: 550 12th Street, SW, Room 5133, Washington, DC, 20004
Voice: (202) 245-7307
TTY: (202) 205-5637
Fax: (202) 245-7636
E-mail: carolyn.corlett@ed.gov
Internet: www.ed.gov/about/offices/list/osers/index.html
Description:
The Clearinghouse on Disability Information, a service of the U.S. Department of Education, responds to people with disabilities and others who request information by conducting research and providing documents related to federal funding available for disability-related programs. Clearinghouse staff members also may refer requests to other sources of disability-related information. Information provided may be useful to disabled individuals and their families, schools and universities, teachers and school administrators, and organizations who serve people with disabilities.
Council for Exceptional Children (CEC)
Executive Director: Bruce Ramirez
Public Information Contact: Diane Shinn, Communications Director
Address: 2900 Crystal Drive, Suite 1000, Arlington, VA, 22202
Voice: (703) 620-3660
Toll-free Voice: (888) 232-7733
Toll-free TTY: (866) 915-5000
Fax: (703) 264-9494
E-mail: service@cec.sped.org
Internet: www.cec.sped.org
Description:
The Council for Exceptional Children (CEC) is the largest professional organization dedicated to improving the educational success of individuals with disabilities or gifts. CEC advocates for appropriate government policies, sets professional standards, provides professional development, advocates for underserved individuals with exceptionalities, and helps professionals obtain conditions and resources for effective professional practice. Holds annual convention; contact CEC for date and location. Professional journals, brochures, and a newsletter are available.
Publications:
Exceptional Children
Frequency: quarterly
Type: professional journal
Teaching Exceptional Children
Frequency: published six times a year
Type: professional magazine
Teaching Exceptional Children
Frequency: published six times a year
Type: professional magazine
Council for Learning Disabilities (CLD)
Executive Director: Linda Nease
Address: 11184 Antioch Road, #405, Overland Park, KS, 66210
Voice: (913) 491-1011
Fax: (913) 491-1012
E-mail: CLDinfo@ie-events.com
Internet: www.cldinternational.org
Description:
The Council for Learning Disabilities (CLD) is an international organization of and for professionals who represent diverse disciplines and who are committed to enhancing the education and development of students with learning disabilities. CLD promotes evidence-based teaching, collaboration, research, leadership, and advocacy. CLD establishes standards of excellence and promotes innovative strategies for research and practice. Holds annual convention; contact CLD for date and location.
Publications:
LD Forum
Frequency: published five times a year
Type: professional newsletter
Learning Disabilities Quarterly
Frequency:
Type: professional journal
Learning Disabilities Quarterly
Frequency:
Type: professional journal
Council of Academic Programs in Communication Sciences and Disorders (CAPCSD)
President: Larry Small, Ph.D.
Executive Administrator: Frances Laven, M.S.
Address: P.O. Box 26532, Minneapolis, MN, 55426
Voice: (952) 920-0966
Fax: (952) 920-6098
E-mail: cap@incnet.com
Internet: www.capcsd.org
Description:
The Council of Academic Programs in Communication Sciences and Disorders (CAPCSD) is an organization of university programs in speech-language pathology; audiology; and speech, language, and hearing sciences. It represents more than 2,000 faculty and administrators from universities in the United States and abroad. CAPCSD advocates for academic programs in communication sciences and disorders and facilitates information exchange among programs and personnel. It also serves as an advisory group to professional associations, legislative bodies, and government agencies. Holds annual conference; contact CAPCSD for date and location. A professional directory, brochures/pamphlets, and reports are available.
Council of American Instructors of the Deaf (CAID)
President: Larry K. Quinsland
Address: P.O. Box 377, Bedford, TX, 76095-0377
Voice: (817) 354-8414
TTY: (817) 354-8414
E-mail: caid@swbell.net
Internet: www.caid.org
/ www.caidconference.org
Publications:
News & Notes
Frequency: quarterly
Type: professional newsletter
American Annals of the Deaf
Frequency: quarterly
Type: professional journal, supplemented by a reference issue
American Annals of the Deaf
Frequency: quarterly
Type: professional journal, supplemented by a reference issue
Described and Captioned Media Program (DCMP), National Association of the Deaf
Project Director: Bill Stark
Address: 1447 East Main Street, Spartanburg, SC, 29307
Toll-free Voice: (800) 237-6213
Toll-free TTY: (800) 237-6819
Fax: (800) 538-5636
E-mail: info@dcmp.org
Internet: www.dcmp.org
Description:
The Described and Captioned Media Program (DCMP) provides services designed to support and improve the academic achievement of students who are blind, visually impaired, deaf, hard-of-hearing, or deaf-blind. These services include: (1) a library of free-loan described and captioned educational media; (2) a clearinghouse of information related to educational media access, including a gateway to Internet resources related to accessibility; and (3) a center for training and evaluation of any service provider desiring to appear on the DCMP’s approved lists of description and captioning service providers. There are no user registration or service fees. The DCMP is funded by the U.S. Department of Education and administered by the National Association of the Deaf.
Disability Rights Office, Consumer & Governmental Affairs Bureau, Federal Communications Commission (FCC)
Chief: Thomas Chandler
Address: 445 12th Street, SW, Washington, DC, 20554
Voice: (202) 418-2516
Toll-free Voice: (888) 225-5322
TTY: (202) 418-0189
Toll-free TTY: (888) 835-5322
Fax: (866) 418-0232
E-mail: fccinfo@fcc.gov
Internet: www.fcc.gov/cgb/dro
Description:
The Disabilities Rights Office, housed within the Consumer and Governmental Affairs Bureau at the Federal Communications Commission (FCC), ensures that FCC actions and policies enable people with disabilities to have the same access as everyone else to telecommunications. FCC implements mandates for nationwide telephone relay services, accessibility, and usability of telecommunications wireline and wireless products and services. These services include hearing aid compatibility of phones, closed captioning of television programming, and accessibility of emergency information on television.
Disability Rights Section, Civil Rights Division, U.S. Department of Justice (DOJ)
Public Information Contact: Information Specialists
Address: 950 Pennsylvania Avenue, NW, Washington, DC, 20530
Toll-free Voice: (800) 514-0301
Toll-free TTY: (800) 514-0383
Fax: (202) 514-0404
Internet: www.ada.gov
Description:
The Disability Rights Section (DRS) is part of the Civil Rights Division of the U.S. Department of Justice (DOJ). DRS focuses on all disabilities and is especially knowledgeable about the interpretation of the Americans with Disabilities Act of 1990. The organization offers an information line for all inquiries as well as assistance to state and local government entities, private-sector business professionals, and the general public. Fact sheets, brochures/pamphlets, online publications, and a professional report are available. Some materials in Spanish and other languages are available.
Publications:
Enforcing the ADA: A Status Report from the Department of Justice
Frequency: quarterly
Type: report
Dogs for the Deaf, Inc.
President/CEO: Robin Dickson
Information Resources Coordinator: Kimberly Miller
Address: 10175 Wheeler Road, Central Point, OR, 97502
Voice: (541) 826-9220
Toll-free Voice: (800) 990-DOGS (3647)
TTY: (541) 826-9220
Fax: (541) 826-6696
E-mail: info@dogsforthedeaf.org
Internet: www.dogsforthedeaf.org
Description:
Dogs for the Deaf, Inc., rescues dogs from shelters and trains them to respond to environmental sounds such as smoke alarms, door bells, alarm clocks, baby cries, telephones, and the sound of a person’s name. The dogs also are obedience-trained and socialized. They are then placed, free of charge, in the homes of deaf and hard-of-hearing applicants who live in the United States and Canada and who want and need the benefits of a professionally trained hearing dog. Professional/consumer newsletter, fact sheets, and online publications are available.
Publications:
Canine Listener
Frequency: quarterly
Type: newsletter
Dyslexia Research Institute (DRI)
Director: Patricia K. Hardman, Ph.D.
Public Information Contact: Amber Mitchell
Address: 5746 Centerville Road, Tallahassee, FL, 32309
Voice: (850) 893-2216
Fax: (850) 893-2440
E-mail: dri@talstar.com
Internet: www.dyslexia-add.org
Description:
The goal of the Dyslexia Research Institute (DRI) is to expand the knowledge of parents and professionals in the areas of dyslexia and attention deficit disorders. Direct instruction is provided through a full multisensoral curriculum for both adults and children. DRI runs a full-time school, called Woodland Hall Academy, for dyslexic individuals. DRI provides instruction through informational seminars, teacher training, and advocacy/consultation. Research papers are available.
Foundation Fighting Blindness, Inc. (FFB)
Chief Executive Officer: William T. Schmidt
Constituent Service Coordinator: Mitsy Palmer
Address: 11435 Cronhill Drive, Owings Mills, MD, 21117-2220
Voice: (410) 568-0150
Toll-free Voice: (800) 683-5555
Toll-free TTY: (800) 683-5551
Fax: (410) 363-2393
E-mail: info@fightblindness.org
Internet: www.fightblindness.org
Description:
The mission of the Foundation Fighting Blindness, Inc., (FFB) is to drive the research that will provide preventions, treatments, and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases. FFB offers its information and referral services to affected individuals and their families as well as to doctors and eye care professionals. FFB also provides comprehensive information kits on retinitis pigmentosa, macular degeneration, and Usher syndrome. Holds a national conference approximately yearly: contact FFB for details. Publications feature articles on coping, research updates, and foundation news.
Publications:
InFocus
Frequency: triannual
Type: newsletter
InSight
Frequency: published about five times a year
Type: e-newsletter
InSight
Frequency: published about five times a year
Type: e-newsletter
Gallaudet University, Laurent Clerc National Deaf Education Center, Public Relations and Publications
Director of Public Relations and Publications: Danielle Puzio
Information Services Coordinator: Anita Gilbert
Address: 800 Florida Avenue, NE, Washington, DC, 20002
Voice: (202) 651-5051
TTY: (202) 651-5051
Fax: (202) 651-5708
E-mail: clearinghouse.infotogo@gallaudet.edu
Internet: clerccenter.gallaudet.edu
Description:
The Public Relations and Publications Office at Gallaudet University’s (GU’s) Laurent Clerc National Deaf Education Center provides information about diverse topics related to deaf and hard-of-hearing children and young adults from infancy to age 21. The office responds to inquiries and also collaborates with authors from within the Gallaudet community and nationwide to design, produce, and disseminate books, videotapes, periodicals, and other information related to deaf and hard-of-hearing children, their families, and the professionals who serve them. Fact sheets, brochures, and a directory are available.
Odyssey
Frequency: semiannual
Type: magazine
Odyssey
Frequency: semiannual
Type: magazine
Hear Me Foundation
Executive Director: Tamala Irish
Executive Director: Tamala Irish
Address: 4814 Woodstream Village Drive, Kingwood, TX, 77345
Voice: (281) 359-6725
Fax: (281) 361-9109
E-mail: info@hearmefoundation.org
E-mail: mirish4814@earthlink.net
Description:
The mission of the Hear Me Foundation is to promote positive life experiences via camp activities and year-round events primarily for oral-deaf and hard-of-hearing children, their siblings, and their families. The Hear Me Foundation provides families with the resources to learn specific skills necessary to monitor their child’s healthy development, including listening, speech, language, and emotional and socialization skills. The foundation also is a service provider for the Interactive Metronome, a training system to improve a child’s coordination, focus, and attention span. Holds annual meeting (Camp Hear Me); contact the Hear Me Foundation for date and location.
Holley Institute
President: Ardis J. Gardella
Address: 22151 Moross Road, Professional Building I, Suite 223, Detroit, MI, 48236-2172
Voice: (313) 343-7583
Voice: (313) 343-7484
TTY: (313) 343-8789
Fax: (313) 343-4111
E-mail: ardis.gardella@stjohn.org
E-mail: pamela.wong.stjohn.org
Internet: www.stjohn.org/holley
Description:
The mission of the Holley Institute, a nonprofit organization founded in 1993, is to assist deaf, deaf-blind, and hard-of-hearing individuals by providing services and programs aimed at improving their quality of life. Institute volunteers screen newborn infants for hearing loss at St. John Hospital in Detroit, MI. The institute owns and operates the Holley Family Village, located in Brooklyn, MI, where it offers educational, recreational, and mental health programs for deaf, deaf-blind, and hard-of-hearing children, teens, adults, and their families. The institute also offers American Sign Language classes at some Michigan locations.
Publications:
The Holley Institute Newsletter
Frequency: published quarterly
Type: other
Hyperacusis Research Limited
President: Bryan Pollard
Address: P.O. Box 1295, Marlboro, MA , 01752
E-mail: bryan@hyperacusisresearch.org
Internet: www.hyperacusisresearch.org
Description:
Hyperacusis Research Limited is dedicated to improving the quality of life for patients who suffer from hyperacusis and hyperacusis-related disorders. Hyperacusis Research is working through research conferences to raise awareness of this challenging auditory disorder. Central to the mission of Hyperacusis Research is facilitating and supporting biomedical research that will lead to novel, effective therapies for the treatment of hyperacusis. Hyperacusis Research is supporting innovative research projects across borders and disciplines with an emphasis on collaboration and knowledge sharing between supported individuals and institutions. Information about managing noise and ongoing research is available on the Hyperacusis Research website.
Job Accommodation Network (JAN)
Co-directors: Anne Hirsh and Lou Orslene
Address: P.O. Box 6080, Morgantown, WV, 26506-6080
Toll-free Voice: (800) 526-7234 or (800) ADA-WORK (232-9675)
Toll-free TTY: (877) 781-9403
Fax: (304) 293-5407
E-mail: jan@jan.wvu.edu
Internet: www.jan.wvu.edu
Description:
The Job Accommodation Network (JAN) is funded by the U.S. Department of Labor’s Office of Disability Employment Policy. JAN is an information and consulting service that provides users with individualized solutions for workplace accommodations. JAN also provides information regarding the Americans with Disabilities Act, the Rehabilitation Act, and other disability-related legislation. In addition, JAN consultants have access to a vast network of resources, organizations, support groups, government agencies, and more that can provide assistance to persons with disabilities. JAN is used primarily by employers, rehabilitation professionals, and individuals with disabilities. All services are free and confidential. Professional/consumer publications are available.
Publications:
The JAN E-News
Frequency: quarterly
Type: newsletter
Learning Disabilities Association of America (LDA)
Executive Director: Mary-Clare Reynolds
Address: 4156 Library Road, Suite 1, Pittsburgh, PA, 15234-1349
Voice: (412) 341-1515
Toll-free Voice: (888) 300-6710
Fax: (412) 344-0224
E-mail: info@ldaamerica.org
Internet: www.ldaamerica.org
Description:
The Learning Disabilities Association of America (LDA) is a nonprofit organization dedicated to identifying causes and promoting prevention of learning disabilities and to enhancing the quality of life for all individuals with learning disabilities and their families. LDA encourages effective identification and intervention, fosters research, and protects the rights of individuals with learning disabilities under the law. The association is an information and referral service for both parents and professionals. LDA, which has more than 300 local chapters across the country, sponsors an annual conference and offers membership. Professional journals, news briefs, and brochures are available. Some materials in Spanish are available.
Publications:
Learning Disabilities
Frequency: three or four times a year
Type: multidisciplinary journal
Media Access Group at WGBH
Director: Larry Goldberg
Public Information Contact: Mary Watkins
Address: 1 Guest Street, Boston, MA, 02134
Voice: (617) 300-3400
TTY: (617) 300-2489
Fax: (617) 300-1035
E-mail: access@wgbh.org
Internet: access.wgbh.org
Description:
The Media Access Group at WGBH consists of the Caption Center, which provides captioning for television, Web-based media, and feature films; the Descriptive Video Service, which creates audio descriptions for blind and visually impaired audiences for these and other media formats; and the WGBH-Carl and Ruth Shapiro Family National Center for Accessible Media (NCAM), which promotes accessibility for classrooms, the Internet, movie theaters, and more through ongoing research and development, outreach, and public policy initiatives. E-mail news updates and professional/consumer fact sheets are available.
National Institute on Deafness and Other Communication Disorders (NIDCD)
Director: James F. Battey, Jr., M.D., Ph.D.
Public Information Contact: Susan Dambrauskas, Chief, Office of Health Communication and Public Liaison
Address: Office of Health Communication and Public Liaison, 31 Center Drive, MSC 2320, Bethesda, MD, 20892-2320
Voice: (301) 496-7243
Toll-free Voice: (800) 241-1044
Toll-free TTY: (800) 241-1055
Fax: (301) 402-0018
E-mail: nidcdinfo@nidcd.nih.gov
Internet: www.nidcd.nih.gov
/ www.noisyplanet.nidcd.nih.gov
Description:
The National Institute on Deafness and Other Communication Disorders (NIDCD), one of the National Institutes of Health, supports and conducts research and research training on the normal and disordered processes of hearing, balance, taste, smell, voice, speech, and language. The NIDCD develops health information based on scientific discovery and disseminates it to the public. In October 2008, the NIDCD launched It's a Noisy Planet. Protect Their Hearing (www.noisyplanet.nidcd.nih.gov). This national campaign is designed to increase awareness among parents of youth ages 8 to 12 about the causes and prevention of noise-induced hearing loss. The NIDCD provides a toll-free telephone service through its information clearinghouse. Fact sheets, brochures, teaching curricula, and reports are available, with many in Spanish.
Publications:
Inside
Frequency: quarterly
Type: newsletter
NIDCD Resources Directory
Frequency: biannual
Type: print and online directory of organizations and their resources
NIDCD Resources Directory
Frequency: biannual
Type: print and online directory of organizations and their resources
National Association of State Directors of Special Education, Inc. (NASDSE)
Executive Director: Bill East, Ed.D.
Address: 1800 Diagonal Road, Suite 320, Alexandria, VA, 22314
Voice: (703) 519-3800
Fax: (703) 519-3808
E-mail: nasdse@nasdse.org
Internet: www.nasdse.org
Description:
The National Association of State Directors of Special Education, Inc., (NASDSE) is a nonprofit organization established to promote and support education programs and related services for children and youth with disabilities in the United States and outlying areas. NASDSE provides services to state agencies to facilitate their efforts to maximize educational outcomes for individuals with disabilities. Holds annual meeting; contact NASDSE for date and location. Miscellaneous reports are released throughout the year, with most available online.
Publications:
NASDE Works!
Frequency: quarterly
Type: newsletter
National Black Association for Speech-Language and Hearing (NBASLH)
Chairperson: Arnell Brady
Public Information Contact: Diane Yenerall
Address: 800 Perry Highway, Suite 3, Pittsburgh, PA, 15229
Voice: (412) 366-1177
Fax: (412) 366-8804
E-mail: nbaslh@nbaslh.org
Internet: www.nbaslh.org
Description:
The National Black Association for Speech-Language and Hearing (NBASLH) is a nonprofit organization dedicated to the sharing of information about communication impairments and differences among black people; the professional development of speech-language pathologists, audiologists, and students; and the advocacy of quality service delivery to the black community. Holds annual convention; contact NBASLH for date and location. A professional journal and newsletter/bulletin are available.
Publications:
ECHO
Frequency: annual
Type: professional journal
Resound
Frequency: semiannual
Type: professional newsletter
Resound
Frequency: semiannual
Type: professional newsletter
National Board for Certification in Hearing Instrument Sciences (NBC-HIS)
Executive Director: Linda K. Jackson
Executive Assistant: Carolyne Pope
Address: 16880 Middlebelt Road, Suite 3, Livonia, MI, 48154
Voice: (734) 522-2900
Fax: (734) 522-0900
E-mail: info@nbc-his.com
Internet: www.nbc-his.com
Description:
The National Board for Certification in Hearing Instrument Sciences (NBC-HIS) is an independent, nonprofit corporation established to develop and promulgate eligibility standards for certification; to develop, process, administer, and score certification examinations based on research; and to award board certification to successful applicants. A professional directory, fact sheets, and online publications are available.
Publications:
Hear & Now
Frequency: quarterly
Type: newsletter
National Center for Learning Disabilities (NCLD)
Executive Director: James H. Wendorf
Executive Assistant: Marcia Griffith-Pauyo
Address: 381 Park Avenue South, Suite 1401, New York, NY, 10016
Voice: (212) 545-7510
Toll-free Voice: (888) 575-7373
Fax: (212) 545-9665
E-mail: help@ncld.org
Internet: www.ld.org
/ www.GetReadytoRead.org
Description:
The National Center for Learning Disabilities (NCLD) works to ensure that the nation’s 15 million children, adolescents, and adults with learning disabilities have every opportunity to succeed in school, work, and life. NCLD provides essential information to parents, professionals, and individuals with learning disabilities; promotes research and programs to foster effective learning; and advocates for policies to protect and strengthen educational rights and opportunities. Get Ready to Read!, a program of NCLD, is a national campaign to build the early literacy skills of all preschool children.
Publications:
Early Learning & Literacy
Frequency: monthly
Type: e-newsletter
LD Essentials
Frequency: quarterly
Type: newsletter
LD Essentials
Frequency: quarterly
Type: newsletter
National Center for Voice and Speech (NCVS)
Director: Ingo Titze, Ph.D.
Public Information Contact: Eric Hunter
Address: University of Utah, Vice President for Research, 201 Presidents Circle Room 210, Salt Lake City, UT, 84112-9011
Voice: (801) 596-2012
Fax: (801) 585-6212
E-mail: ncvsmail@ncvs2.org
E-mail: kent.montgomery@ncvs2.org
Internet: www.ncvs.org
Description:
The National Center for Voice and Speech (NCVS) is an interdisciplinary team of investigators and health care professionals dedicated to vocology, which deals with the powers, limitations, and enhancement of voice and speech. A primary outreach of NCVS is the Summer Vocology Institute, which provides background in vocology and related topics as well as real-world experience in applying those concepts in laboratory, performance, and health services settings. NCVS is headquartered at the University of Utah, under its Vice President for Research, with active associates in several universities across the country. Professional/consumer publications are available, with some materials in Spanish and French.
Publications:
Vocal Vibrations
Frequency: semiannual
Type: newsletter
National Center on Deafness (NCOD)
Director: Roslyn Rosen
Address: 18111 Nordhoff Street, California State University, Northridge, CA, 91330-8267
Voice: (818) 677-2611
TTY: (818) 677-2611
Fax: (818) 677-4899
E-mail: ncod@csun.edu
Internet: www.csun.edu/ncod
Description:
The National Center on Deafness (NCOD) is housed in Jeanne M. Chisholm Hall on the campus of California State University, Northridge. Established in 1962, NCOD was the first postsecondary program in the nation to provide paid professional sign language interpreters for deaf and hard-of-hearing students as well as captioning services as requested. The program has grown to be the largest of its type in the western United States, serving approximately 200 students who are deaf and hard-of-hearing each year. NCOD also provides transition services, academic and career planning, tutorial assistance, and cocurricular events for the students. Additionally, NCOD provides outreach and training through a federal grant.
National Family Association for Deaf-Blind (NFADB)
President: Linda Syler
Public Information Contact: Lori Bookstaver
Address: 141 Middle Neck Road, Sands Point, NY, 11050
Voice: 516-944-8900, ext. 224
Toll-free Voice: (800) 255-0411
Toll-free TTY: (800) 255-0411
Fax: (516) 767-1738
E-mail: nfadb@aol.com
E-mail: mfnfadb@aol.com
Internet: www.NFADB.org
Description:
The National Family Association for Deaf-Blind (NFADB) is founded on the belief that people who are deaf-blind are valued members of society and are entitled to the same opportunities and choices as other people. NFADB supports national policy to benefit people who are deaf-blind, encourages the founding and strengthening of family organizations in each state, shares information related to deaf-blindness, provides resources and referrals, and assists in the development of materials that benefit family members.
Publications:
News from Advocates for Deaf-Blind
Frequency: semiannual
Type: newsletter
National Hearing Conservation Association (NHCA)
President: Rick Neitzel
Public Information Contact: Erin Erickson, Executive Director
Address: 3030 West 81st Avenue, Westminster, CO, 80031
Voice: (303) 224-9022
Fax: (303) 458-0002
E-mail: nhcaoffice@hearingconservation.org
Internet: www.hearingconservation.org
Description:
The National Hearing Conservation Association (NHCA), an association of hearing conservation professionals, is dedicated to preventing hearing loss caused by noise and other environmental factors in all sectors of society. NHCA promotes professional development by improving its members’ skills and practices, providing education and encouraging research, stimulating information exchange and distribution, promoting development of improved and more effective occupational hearing conservation programs, and participating in standards and regulatory activities. Holds annual conference; contact NHCA for date and location.
National Institute on Deafness and Other Communication Disorders (NIDCD) Information Clearinghouse
Project Officer: Susan Dambrauskas
Project Manager: Charlotte Ball
Address: 1 Communication Avenue, Bethesda, MD, 20892-3456
Toll-free Voice: (800) 241-1044
Toll-free TTY: (800) 241-1055
Fax: (301) 770-8977
E-mail: nidcdinfo@nidcd.nih.gov
Internet: www.nidcd.nih.gov
Description:
The National Institute on Deafness and Other Communication Disorders (NIDCD) Information Clearinghouse, a service of NIDCD, is a national resource center for health information on hearing, balance, smell, taste, voice, speech, and language for health professionals, patients, and the public.
National Institute on Disability and Rehabilitation Research, Office of Special Education and Rehabilitative Services (OSERS)
Acting Director: Ruth Brannon
Address: 550 12th Street, SW, Room 6056, Washington, DC, 20024-6122
Voice: (202) 245-7640
Fax: (202) 245-7630
E-mail: ruth.brannon@ed.gov
Internet: www.ed.gov/about/offices/list/osers/nidrr/index.html
Description:
The National Institute on Disability and Rehabilitation Research (NIDRR) is part of the Office of Special Education and Rehabilitative Services (OSERS), U.S. Department of Education. NIDRR supports a comprehensive program of national and international research into all aspects of the rehabilitation of people with disabilities and their successful integration into education, work, and community life. Grants are awarded to institutions of higher education and qualified organizations; the fellowship program provides grants to individuals with advanced rehabilitation credentials. NIDRR administers the Interagency Committee on Disability Research. An online directory of projects and publications is available.
National Organization for Hearing Research Foundation (NOHR)
President: Geraldine Dietz Fox
Public Information Contact: Sarah Schreiner
Address: 225 Haverford Avenue, Suite 1, Narberth, PA, 19072-2234
Voice: (610) 664-3135
Fax: (610) 668-1428
E-mail: smsnohr@att.net
Internet: www.nohrfoundation.org
Description:
The National Organization for Hearing Research Foundation (NOHR) is a 501(c)(3) public charity whose primary objective is to fund research into the prevention, causes, treatments, and cures for hearing loss and deafness. NOHR funds grant proposals that target innovative auditory projects; proposal submissions are reviewed by members of NOHR’s Scientific Review Committee. The most important review criteria for research proposals are scientific value and potential to yield significant new insights in the field of auditory science. Regeneration of sensory hair cells of the inner ear is a research funding priority, and examinations by other scientific disciplines are encouraged. Grant application information is available upon request.
National Organization for Rare Disorders (NORD)
President/CEO: Peter L. Saltonstall
Vice President, Information Services: Mary Dunkle, Vice President for Communications
Address: P.O. Box 1968, 55 Kenosia Avenue, Danbury, CT, 06813-1968
Voice: (203) 744-0100
Toll-free Voice: (800) 999-6673
TTY: (203) 797-9590
Fax: (203) 798-2291
E-mail: orphan@rarediseases.org
Internet: www.rarediseases.org
Description:
The National Organization for Rare Disorders (NORD) is a nonprofit voluntary health agency that serves as a clearinghouse for information on rare disorders. A rare disorder is a disease or condition that affects fewer than 200,000 Americans. Cumulatively, there are more than 6,000 rare diseases affecting more than 25 million Americans. NORD is committed to the identification, treatment, and cure of rare diseases through education, advocacy, research, and service programs. NORD administers medication assistance programs for certain rare-disease drugs as well as research grants and fellowships.
Publications:
NORD Resource Guide
Frequency: every two years
Type: resource guide
Orphan Disease Update
Frequency: biannual
Type: newsletter
Orphan Disease Update
Frequency: biannual
Type: newsletter
National Stuttering Association (NSA)
Public Information Contact: Tammy Flores
Executive Director:
Address: 119 West 40th Street, 14th Floor, New York, NY, 10018
Voice: (212) 944-4050
Toll-free Voice: (800) 937-8888
Fax: (212) 944-8244
E-mail: info@westutter.org
Internet: www.westutter.org
Description:
The National Stuttering Association (NSA) is a national network of support groups created to meet the needs of children and adults who stutter. NSA offers information and support, provides referrals to specialists, serves as an advocate for the stuttering community, and raises the consciousness of the general public about the disorder. Holds annual convention; contact NSA for date and location. Professional and consumer fact sheets, brochures/pamphlets, and books are available.
Publications:
Family Voices
Frequency: quarterly newsletter
Type: by and for children, teens, parents, speech-language pathologists, and others who support individuals who stutter
Letting Go
Frequency: quarterly newsletter
Type: about stuttering research, therapy options, and coping strategies
Letting Go
Frequency: quarterly newsletter
Type: about stuttering research, therapy options, and coping strategies
National Temporal Bone, Hearing, and Balance Pathology Resource Registry
Director: Joseph B. Nadol, Jr., M.D.
Public Information Contact: Nicole Pelletier, Registry Coordinator
Address: Massachusetts Eye and Ear Infirmary, 243 Charles Street, Boston, MA, 02114-3096
Voice: (617) 573-3711
Toll-free Voice: (800) 822-1327
Toll-free TTY: (800) 439-0183
Fax: (617) 573-3838
E-mail: tbregistry@meei.harvard.edu
Internet: www.tbregistry.org
Description:
The National Temporal Bone, Hearing, and Balance Pathology Resource Registry, which is sponsored by the National Institute on Deafness and Other Communication Disorders, promotes research into hearing and balance disorders through the study of the temporal bone and related brain structures. The registry maintains a computerized database of all U.S. temporal bone collections, disseminates information on temporal bone donation, enrolls individuals with hearing/balance disorders as temporal bone donors, educates professionals about temporal bone research, and conserves at-risk collections. Free searches of the registry’s database are available to interested otopathologic researchers. A professional/consumer newsletter, brochures/pamphlets, and online publications are available.
Publications:
The Registry
Frequency: semiannual
Type: newsletter
NISH
President/CEO: E. Robert Chamberlin
Public Information Contact: Barbara Van Allen, Vice President of Communications, Public Policy, and Training
Address: 8401 Old Courthouse Road, Vienna, VA, 22182
Voice: (571) 226-4660
TTY: (703) 560-6512
Fax: (703) 849-8916
Internet: www.nish.org
Description:
NISH is a national nonprofit organization established in 1974 under the Javits-Wagner-O’Day (JWOD) Act. Its mission is to create employment opportunities for individuals with severe disabilities by securing federal contracts. A network of more than 600 nonprofit agencies affiliated with the AbilityOne program (formerly the JWOD program) employ people with blindness or severe disabilities who deliver quality services and products to federal customers nationwide. NISH provides nonprofit agencies and federal partners with the tools they need to manage contracts successfully.
Occupational Safety and Health Administration (OSHA)
Director: Jennifer A. Ashley
Public Information Contact: Camilla McArthur, Chief, Communications Production
Address: 200 Constitution Avenue, NW, Room N-3647, Washington, DC, 20210
Voice: (202) 693-1999
Toll-free Voice: (800) 321-OSHA (6742)
Toll-free TTY: (877) 889-5627
Fax: (202) 693-1635
Internet: www.osha.gov
/ www.osha.gov/as/opa/spanish/index.html
Description:
The Occupational Safety and Health Administration (OSHA), a division of the U.S. Department of Labor, is the lead federal organization devoted to protecting the safety and health of America’s workers. OSHA produces and enforces protective standards for occupational safety and health and also provides employers and employees with technical and consultative assistance. OSHA also works with employers through various programs and partnerships to help them develop effective safety and health systems to reduce injuries and illnesses in the workplace. Assistance products and tools are available. Additional resources are available through the OSHA Publications Office.
The Department of Labor’s Office of Disability Employment Policy (ODEP) provides national leadership by developing and influencing disability and related employment policy as well as practices that affect the employment of people with disabilities, including communication disorders.
Publications:
Quick Takes
Frequency: bimonthly
Type: newsletter
Office of Special Education Programs (OSEP), Office of Special Education and Rehabilitative Services (OSERS)
Acting Director/Official Deputy: Patricia J. Guard
Address: U.S. Department of Education, 550 12th Street, SW, Room 4109, Washington, DC, 20202-2600
Voice: (202) 245-7459
Fax: (202) 245-7616
Internet: www.ed.gov/about/offices/list/osers/osep/index.html
Description:
The Office of Special Education Programs (OSEP), an office within the U.S. Department of Education, is dedicated to improving results for infants, toddlers, children, and youth with disabilities—including communication disorders—from birth through age 21 and providing leadership and financial support to assist states and local districts. OSEP awards formula grants to states as well as discretionary grants to institutions of higher education and other nonprofit organizations to support research, demonstrations, technical assistance and dissemination, technology and personnel development, and parent-training and information centers. Professional and consumer publications are available.
Postsecondary Education Programs Network (pepnet 2)
pepnet 2 Director: Cathy McLeod
Address: 18111 Nordhoff Street, Northridge, CA 91330-8267,
E-mail: help@pepnet.ogr
Internet: www.pepnet.org
Description:
Pepnet2 (pn2) recognizes the full range of postsecondary education and training options available for individuals who are deaf or hard-of-hearing, including those with co-occurring disabilities, and strives to enhance the capacity of those institutions to appropriately serve this diverse student population. Pn2 is a national collaboration of professionals with expertise in a broad array of content areas and a variety of environments, including research, technology, personnel development, media production, and technical assistance. Our mission and the focus of our resources is to increase the education, career, and lifetime choices available to individuals who are deaf or hard-of- hearing. Our resources include live, one-on-one assistance in a variety of communication modes, in-person and online training, and materials that are downloadable, printable or available as hard copies. Pn2 is funded through a cooperative agreement with the Research to Practice Division, Office of Special Education Programs, U.S. Department of Education.
Publications:
PEPNet Perspectives
Frequency: semiannual
Type: newsletter
Quota International
Executive Director: Kathleen Treiber
Public Information Contact: Nancy Fitzpatrick, M.S., Deputy Executive
Address: 1420 21st Street, NW, Washington, DC, 20036
Voice: (202) 331-9694
Fax: (202) 331-4395
E-mail: staff@quota.org
Internet: www.quota.org
Description:
Quota International, founded in 1919, is a volunteer service organization with clubs in North and South America, the Caribbean, the South Pacific, Southeast Asia, and Europe. Under the motto of “We Share,” Quota members perform activities that meet the special needs of people in their communities. Quota members are known especially for service to disadvantaged women and children and individuals who are deaf, hard-of-hearing, and speech impaired. Quota clubs provide equipment, treatment, programs, vocational training, and education related to speech and hearing and promote hearing protection through a Healthy Hearing Ear Plugs campaign. Holds a biennual convention; see website for details.
Publications:
The Quotarian Magazine for members
Frequency: twice a year
Type: magazine
Recurrent Respiratory Papillomatosis Foundation (RRPF)
Director: Bill Stern
Address: P.O. Box 6643, Lawrenceville, NJ, 08648-0643
Voice: (609) 530-1443
Fax: (866) 498-7559
E-mail: rrpf@rrpf.org
Internet: www.rrpf.org
Description:
The Recurrent Respiratory Papillomatosis Foundation (RRPF) was created to provide family support; promote public awareness; and aid in the prevention, cure, and treatment of recurrent respiratory papillomatosis (RRP), a rare disease that affects the voice. The most common symptoms of RRP are a hoarse or strained voice, dysphonia (difficulty in speaking), or aphonia (loss of voice). The organization focuses primarily on networking within the RRP community, including patients, families, medical practitioners, and researchers. Its goal is to stimulate more RRP-related research that may lead to more effective treatments and, ultimately, a cure for this disease. Professional/consumer brochures/pamphlets are available.
Publications:
RRP Medical Reference Service
Frequency: annually produced
Type: listing of current references/abstracts
RRP Newsletter
Frequency: published annually
Type: other
RRP Newsletter
Frequency: published annually
Type: other
Society for Ear, Nose, and Throat Advances in Children (SENTAC)
President: David Parons, M.D.
Address: Charlotte Eye, Ear, Nose, and Throat Associates, 6035 Fairview Road, Charlotte, NC, 28210-3256
Voice: (704) 295-3000
Fax: (704) 295-3220
E-mail: parsonsdav@aol.com
Internet: www.sentac.org
Description:
The Society of Ear, Nose, and Throat Advances in Children (SENTAC) is an interdisciplinary society of health professionals who share an interest in ear, nose, and throat diseases in children, including communication disorders. Its membership includes physicians, nurses, speech therapists, audiologists, and social workers. The annual meeting provides a forum for the presentation and exchange of ideas and information; contact SENTAC for date and location. A professional newsletter, directory, and brochures are available.
Publications:
SENTAC Newsletter
Frequency: annual
Type: newsletter for members
Society of Otorhinolaryngology and Head-Neck Nurses, Inc. (SOHN)
Executive Director: Sandra Schwartz, M.S., R.N., CORLN
Address: 202 Julia Street, New Smyrna Beach, FL, 32168
Voice: (386) 428-1695
Fax: (386) 423-7566
E-mail: sohnnet@aol.com
Internet: www.sohnnurse.com
Description:
The Society of Otorhinolaryngology and Head-Neck Nurses, Inc., (SOHN), an organization of professional registered nurses, promotes continuing education opportunities within the field of otorhinolaryngology nursing and endorses professional standards for clinical practice and research. Holds annual congress and symposium; contact SOHN for date and location. A professional newsletter and journal are available.
Publications:
ORL-Head and Neck Nursing
Frequency: quarterly
Type: professional journal
The Update
Frequency: published five times a year
Type: professional newsletter
The Update
Frequency: published five times a year
Type: professional newsletter
UConn Taste and Smell Clinic
Clinic Director: Norman Mann, M.D.
Address: University of Connecticut Health Center, Taste and Smell Clinic, 263 Farmington Avenue, MC 1718, Farmington, CT, 06030-1718
Voice: (860) 679-2459
Fax: (860) 679-4760
E-mail: ccda@up.uchc.edu
Internet: www.uchc.edu/uconntasteandsmell/
Description:
The UConn Taste and Smell Clinic is run by a multidisciplinary team of clinicians dedicated to developing ways to evaluate and treat patients with chemosensory disorders. Data from the evaluation enable the clinic to maintain an extensive research database on chemosensory problems. The UConn Taste and Smell Clinic was established with funding from the National Institute on Deafness and Other Communication Disorders. Professional/consumer print and online publications are available.
University of Pennsylvania Smell and Taste Center
Director: Richard L. Doty, Ph.D.
Administrative Assistant: Geraldine Fischer
Address: 3400 Spruce Street, 5 Ravdin Pavilion, Philadelphia, PA, 19104
Voice: (215) 662-6580
Fax: (215) 349-5266
E-mail: doty@mail.med.upenn.edu
E-mail: geraldine.fischer@uphs.upenn.edu
Internet: www.med.upenn.edu/stc
Description:
The University of Pennsylvania Smell and Taste Center has three primary goals: to provide clinical evaluation, treatment, and counseling for patients experiencing smell and taste disorders; to provide facilities and intellectual focus for research in basic and applied aspects of chemosensation; and to provide training for students, doctoral-level scientists, and other professionals interested in chemoreception sciences. Professional/consumer brochures are available.
Vestibular Disorders Association (VEDA)
Executive Director: Lisa Haven, Ph.D.
Address: P.O. Box 13305, Portland, OR, 97213-0305
Voice: (503) 229-7705
Toll-free Voice: (800) 837-8428
Fax: (503) 229-8064
E-mail: info@vestibular.org
Internet: www.vestibular.org
Description:
The Vestibular Disorders Association (VEDA) is a nonprofit organization that provides information, support, and advocacy to people with vestibular disorders and the health professionals who treat them. Such disorders include labyrinthitis, benign paroxysmal positional vertigo (BPPV), Ménière’s disease, ototoxicity, and perilymph fistula. Frequently reported symptoms of these disorders are dizziness, unsteadiness or imbalance, vertigo, nausea, hearing loss, visual disturbances, and tinnitus. A provider directory of health care specialists, newsletter, short publications, books, and DVDs/videos are available, with some in Spanish.
Publications:
On the Level
Frequency: quarterly
Type: newsletter
Voice Health Institute
President: John L. Ward, Ph.D.
Address: One Bowdoin Square, Floor 11, Boston, MA, 02114
Voice: 617-720-5000
E-mail: info@voicehealthinstitute.org
Internet: www.voicehealthinstitute.org
Description:
The Voice Health Institute (VHI) is an independent, 501(c)(3) nonprofit private foundation founded in 2003, and formerly known as the Institute of Laryngology and Voice Restoration (ILVR). The VHI is dedicated to advancing laryngology and voice restoration through sponsoring innovative basic and translational research as well as promoting education and outreach programs. The VHI works in cooperation with the Massachusetts Institute of Technology and other institutions.
Publications:
Your Voice
Frequency:
Type: newsletter
World Federation of the Deaf (WFD)
President: Markku Jokinen
Administrative Secretary: Phillipa Sandholm
Address: P.O. Box 65, FIN-00401, Helsinki, Finland,
Voice: +358-9-580-3573
Fax: +358-9-580-3572
E-mail: info@wfdeaf.org
Internet: www.wfdeaf.org
Description:
The World Federation of the Deaf (WFD) is dedicated to promoting the human and social rights of people who are deaf. WFD advocates for their full participation in society by equalizing opportunities, strengthening the status of sign language, advancing educational opportunities for people who are deaf and promoting their access to information, and stimulating the efforts of national associations of the deaf to improve the overall situation of deaf communities in every country. For information about conferences, camps, and meetings, contact WFD. Informational materials are available.
Publications:
WFD NEWS
Frequency:
Type: magazine
WFD Newsletter
Frequency: published six times per year
Type: for members
WFD Newsletter
Frequency: published six times per year
Type: for members
