Directory of Organizations
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 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
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.
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
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
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:
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
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.
Coalition for Usher Syndrome Research
Executive Director: Mark Dunning
Executive Director: Mark Dunning
Address: 1269 Main Street, Concord, MA, 01742
Voice: (617) 951-9542
E-mail: m.dunning@lek.com
Internet: www.usher-syndrome.org
Description:
The Coalition for Usher Syndrome Research is dedicated to helping families cope with Usher syndrome while working diligently to find a cure. Its goal is to provide hope to families with Usher syndrome. Hope here comes in many forms, from the opportunity to connect with other families, to the ability to access the latest information from the world's leading researchers, to the chance to directly participate in the search for a cure. The coalition counts a number of leading institutions and researchers among its national members, who also share information with the finest international institutions.
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.
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
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
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
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.
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.
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
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 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 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 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
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.
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
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
