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Acoustic Neuroma Association (ANA)

Executive Director: Judy B. Vitucci
Address: 600 Peachtree Parkway, Suite 108
Voice: (770) 205-8211
Toll-free Voice: (877) 200-8211
Fax: (877) 202-0239
Last updated: 2011 Jun 30

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

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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
Voice: (703) 836-4444
Fax: (703) 683-5100
Last updated: 2014 Apr 25

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

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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
Voice: (301) 296-5700
Toll-free Voice: (800) 638-8255
TTY: (301) 296-5650
Last updated: 2014 May 5

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
ASHA Leader
Frequency: at least monthly
Type: newspaper

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Aphasia Hope Foundation (AHF)

Founder/Executive Director: Judi Stradinger
Public Information Contact: Sandy Caudell, Program Director
Address: P.O. Box 26304
Voice: (913) 839-8083
Last updated: 2011 Jun 30

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.

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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
Voice: (202) 745-8578
Voice: (202) 745-8270
Fax: (202) 745-8579
Last updated: 2014 Apr 29

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.

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Birth Defect Research for Children, Inc. (BDRC)

Executive Director: Betty Mekdeci
Address: 976 Lake Baldwin Lane, Suite 104
Voice: (407) 895-0802
Last updated: 2011 Jun 30

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

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Brain Injury Association of America

President/CEO: Susan Connors
Director of Consumer Services: Greg Ayotte
Address: 1608 Spring Hill Road
Voice: (703) 761-0750
Toll-free Voice: (800) 444-6443
Fax: (703) 761-0755
Last updated: 2011 Jun 30

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

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CHERAB Foundation

Founder: Lisa Geng
Address: P.O. Box 8524
Voice: (772) 335-5135
Last updated: 2011 Jun 30

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.

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Hear Me Foundation

Executive Director: Tamala Irish
Executive Director: Tamala Irish
Address: 4814 Woodstream Village Drive
Voice: (281) 359-6725
Fax: (281) 361-9109
Last updated: 2011 Jun 30

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.

Frequency:
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National AMBUCS, Inc.

Executive Director: Joseph Copeland
Address: P.O. Box 5127
Voice: (336) 852-0052
Fax: (336) 852-6830
Last updated: 2011 Jun 30

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
AmTryke Catalog
Frequency: bi-annually
Type: magazine

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National Aphasia Association (NAA)

Executive Director: Ellayne Ganzfried, M.S., CCC-SLP
Address: 350 7th Avenue, Suite 902
Voice: (212) 267-2814
Toll-free Voice: (800) 922-4622
Fax: (212) 267-2812
Last updated: 2011 Jun 30

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

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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
Voice: (301) 496-7243
Toll-free Voice: (800) 241-1044
Toll-free TTY: (800) 241-1055
Fax: (301) 402-0018
Last updated: 2011 Jun 30

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

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National Institute on Deafness and Other Communication Disorders (NIDCD) Information Clearinghouse

Project Officer: Susan Dambrauskas
Address: 1 Communication Avenue
Toll-free Voice: (800) 241-1044
Toll-free TTY: (800) 241-1055
Fax: (301) 770-8977
Last updated: 2014 May 5

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.

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Neurofibromatosis Network

President: Cheri Stewart
Address: 213 Wheaton Avenue
Voice: (630) 510-1115
Last updated: 2014 May 5

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

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United States Society for Augmentative and Alternative Communication (USSAAC)

President: Chris Klein
Public Information Contact: Barbara Figueiredo, USSAAC Office Manager
Address: 34 Market Street
Voice: (928) 585-8525
Fax: (410) 296-5710
Last updated: 2014 May 2

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

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