Directory of Organizations
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
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.
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
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 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
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
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
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
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
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.
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
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
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
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.
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 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
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
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
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
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
