Links to Related Websites
[ALS Specific] [AAC Specific] [Professional Organizations] [Manufacturers' Organizations] [PALS’ Pages][Funding]
The ALS
Association seeks to promote awareness and understanding of ALS and the work
of The ALS Association by providing up-to-date information and education
materials to the ALS community... ALS patients and families, caregivers,
researchers and members in the health care fields. The association also sponsors
ALS research and provides patient support groups and education.
Information and Referral Service: 800-782-4747
e-mail: alsinfo@alsa-national.org
website:
www.alsa.org
The ALS
Association Greater New York Chapter is the only national not-for-profit
voluntary health organization dedicated solely to the fight against ALS. They
serve the ALS community in New York City, Long Island, Westchester County,
Rockland County and Northern New Jersey. The Greater New York Chapter offers a
wide range of services and assistance to ALS patients and their families.
Information: 212-619-1400
e-mail: als@als-ny.org
website: www.als-ny.org
The International
Alliance of ALS/MND Associations was founded in November 1992 to provide a
forum for support and the exchange of information between the worldwide
associations. More than 50 national patient support and advocacy groups from
over 40 countries worldwide have joined together to form the International
Alliance.
http://alsmndalliance.org
The International Ventilator Users Network (IVUN) links ventilator
users with each other and with health care professionals interested in
mechanical ventilation and home care.
e-mail: gini_intl@msn.com
http://www.post-polio.org/ivun
The Les Turner ALS Foundation is the nation's largest independent publicly supported non-profit
organization devoted to the treatment and elimination of ALS. The Foundation
supports the ALS community in Chicago and its suburbs and is affiliated with
Northwestern University Medical School.
www.lesturnerals.org
The Muscular
Dystrophy Association (MDA), provides support for ALS as well as about 40
other neuromuscular diseases. MDA is a substantial research funding
organizations and supports 230 clinics in the U.S. It is an excellent resource
for both research funding and patient services.
800-572-1717
e-mail: mda@mdausa.org
website: www.mdausa.org
For 20 years, support from the SHARE Foundation has enabled
the University of Massachusetts Dartmouth Center for Rehabilitation Engineering
to provide adaptive computer equipment for people with disabilities, including
ALS. Their goal is to enable people to
communicate independently, many for the first time.
The adaptive equipment is provided at little or no cost.
e-mail: SHARE@umassd.edu
website: www.share.umassd.edu
The Nathaniel H. Kornreich Technology Center, which is part of the
National Center for Disability Services, is a not-for-profit assistive
technology, demonstration, education, and evaluation center. Through the use of
assistive technology, the Center is dedicated to promoting the full
participation and independence of children and adults with disabilities in
school, at work, at home, and in the community.
www.ncds.org/ncds/kornreich/newkorn.htm
The mission of NIDRR's Rehabilitation Engineering Research Center on Communication Enhancement (the AAC-RERC) is to assist the users of AAC technologies in achieving their goals by advancing and promoting AAC technologies and supporting the individuals that use, manufacture, and recommend them. The AAC-RERC conducts research, sponsors/conducts conferences, develops technology, provides technical assistance, conducts training seminars, facilitates technology transfer, and evaluates technology. Six major research and development centers (Duke University, University of Nebraska-Lincoln, Pennsylvania State University, University of North Carolina at Chapel Hill, University of New York at Buffalo, and Temple University), have been brought together on this effort. http://www.aac-rerc.org/
Hattie B. Munroe/Barkley Memorial Augmentative and Alternative Communication Centers. This site from the University of Nebraska-Lincoln, contains unique and informative information on AAC vendors, vocabulary lists, device tutorials, intervention resources, recent UNL Medical School powerpoint presentations, and an updates section that lists new AAC books and research opportunities. http://aac.unl.edu/
Medicare Funding of AAC Technology
Please check this site (AAC RERC Medicare Page) regularly and urge others, who serve Medicare eligible persons with severe communication disabilities, to do so as well. This site is dynamic and is changing constantly as new information becomes available.
ASHA (American Speech-Language Hearing Association) is the parent
organization of professionals working with individuals with communication
impairments.
www.asha.org
ASHA Special
Division 12, Augmentative and Alternative Communication
http://www.asha.org/sidivisions/sid_list.htm
ISAAC (International Society for Augmentative and Alternative Communication)
is an information and referral organization for individuals concerned and/or
working with communication disorders.
www.isaac-online.org
RESNA (Rehabilitation Engineering Society of North America) is
an interdisciplinary association that addresses research, development,
dissemination, integration and utilization of knowledge in rehabilitation and
assistive technology.
www.resna.org
USSAAC (United States Society for Augmentative &
Alternative Communication)
Phone: 941-312-0992
Email: USSAAC@aol.com
CAMA: Communication
Aid Manufacturers Association is an organization comprised of AAC
manufacturers that work together to advance the field of augmentative
communication. They conduct full-day workshops demonstrating a variety of AAC
products. Their site offers a listing of their organization members and
information on the dates and locations of their regional tours.
http://www.aacproducts.org
The Assistive
Technology Industry Association (ATIA) is a not-for-profit membership
organization of organizations manufacturing or selling technology-based
assistive devices for people with disabilities, or providing services associated
with or required by people with disabilities.
www.atia.org
The ALS March of Faces is a patient/caregiver governed and operated non-profit organization,
dedicated to heightening public awareness of ALS, and advocating on issues that concern
and/or benefit PALS (People with ALS)
www.march-of-faces.org
The ALS Survival Guide is dedicated to all people suffering from ALS or Amyotrophic Lateral
Sclerosis. It is an excellent resource for information about the disease and for
accessing the general ALS community. This site is a good central resource for
exploring ALS information on the web.
www.alssurvivalguide.com
World-renown astrophysicist, Stephen Hawking, was diagnosed with ALS
in 1963. He is a long-time user of augmentative communication devices.
www.hawking.org.uk/disable/dindex.html
Ride for Life is
an all volunteer organization founded by ALS patients, caregivers and those who
care about people living with ALS. The mission is to raise public awareness of
ALS, assist research in finding a cure, support ALS patients and their families,
and provide the ALS community with the latest ALS related news, information and
inspiration.
www.rideforlife.com