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Support Groups Information Center

Organizations

1. 1 Voice Communicating Together
   1 Voice is a network and support group for children who use AAC and their families. It is run by a committee of parents, adults who use AAC, and professionals. Volunteers are responsible for organising and running events, as well as for all administration, policy making, fundraising, publicity, and other duties. 1 Voice holds weekend networking events and conferences for families, teens, and younger children in the United Kingdom. [More Information on 1 Voice Communicating Together]
   
   
2. ALS Society of Canada
   The ALS Society of Canada supports research towards a cure for amyotrophic lateral sclerosis (ALS); supports provincial ALS societies in their provision of quality care for persons living with ALS; and builds public awareness of ALS and its impact. The ALS Society's publication, The Northern Neuron, is available on the organization's web site, or a hard copy may be requested from the ALS Society. [More Information on ALS Society of Canada]
   
   
3. AlzOnline
   AlzOnline (formerly Alzheimer's Caregiver Support Online) is a telehealth project sponsored by the State of Florida Department of Elder Affairs and the University of Florida (UF) Center for Telehealth. AlzOnline provides caregivers of persons with Alzheimer's and other memory problems with a place where they can participate in online classes, find support, and find the latest information on caregiving. [More Information on AlzOnline]
   
   
4. Association of Blind Citizens
   The ABC is a membership organization of blind/visually impaired persons, their friends and families, and other interested individuals who recognize the needs and issues effecting the blind community. It provides assistance through information and referral services, advocacy, and other supports to maximize and increase options and opportunities for all blind and visually impaired persons. The ABC offers an online newsletter (20/20 Access), informative meetings, and a radio show (In Focus). It sponsors an Assistive Technology Fund (ATF) that makes grants to cover 50% of the retail price of adaptive devices or software. Legally blind residents of the United States are eligible. [More Information on Association of Blind Citizens]
   
   
5. Blind Ambitions Groups
   The Blind Ambitions Groups web site has information for the blind and visually impaired and their families to help them understand blindness better. It contains links to articles, tips, training, support group meetings and other topics specifically for the blind. It also has audio archives for Eyes on Employment and Sound of Sight, two radio shows for the blind that deal with life issues and employment. The programs air on stations in the Dallas-Fort Worth area and on ACB Radio, the Internet radio service of the American Council of the Blind. [More Information on Blind Ambitions Groups]
   
   
6. CareCure Community
   The CareCure Community site contain articles, lectures and other resources that might be or interest to people with a spinal cord injury. There also offer online forums on 13 topical areas. The site is provided by the Spinal Cord Injury Project of the W. M. Keck Center for Collaborative Neuroscience at Rutgers University for the spinal cord injury community. [More Information on CareCure Community]
   
   
7. Chemical Injury Information Network
   "The Chemical Injury Information Network is a support and advocacy organization dealing with Multiple Chemical Sensitivities (MCS). It is run by the chemically injured for the benefit of the chemically injured, and focuses primarily on education, credible research into MCS, and the empowerment of the chemically injured." CIIN publishes a newsletter called Our Toxic Times and a Non-Toxic Buying Guide. The Non-Toxic Buying Guide lists products ranging from less-toxic construction materials to personal hygiene products, along with over 200 suppliers. The Guide costs $7.50 and is available to members only. [More Information on Chemical Injury Information Network]
   
   
8. Chicago Hearing Society
   "To empower deaf, hard of hearing and hearing people to communicate with each other, thereby lessening the isolation which separates them." The Chicago Hearing Society provides information on a variety of events and services for people with hearing impairments in the Chicago area. [More Information on Chicago Hearing Society]
   
   
9. CLAMS: Computer Literate Advocates for Multiple Sclerosis
   Computer Literate Advocates for Multiple Sclerosis is a non-profit 501 (C) (3) organization that strives to bring those with MS out of isolation and into computer communications for support, companionship and information with others sharing this disease. CLAMS is comprised of people who are provisionally diagnosed or diagnosed with Multiple Sclerosis (MS). It is computer information and communication for people with MS, by people with MS. The CLAMS web site includes a bulletin board, chat, and resources. [More Information on CLAMS: Computer Literate Advocates for Multiple Sclerosis]
   
   
10. Darrell Gwynn Foundation
    The Darrell Gwynn Foundation exists to provide support for people with paralysis and prevent spinal cord injuries. The Foundation's Wheelchair Donation Program is actively seeking wheelchair recipients. They donate brand new, highly customized, manual and power wheelchairs to children and adults who have been denied by Medicaid, Medicare, private insurance companies, or those lacking insurance coverage. [More Information on Darrell Gwynn Foundation]
    
    
11. Disabilities Network of New York City
    "The Disabilities Network of New York City (DNNYC) is a coalition of consumers, advocates and professional organizations representing and working on behalf of people of all ages with motor and sensory disabilities. The Disabilities Network seeks, through systems advocacy, to promote full participation of people with physical disabilities in the life of the city by strengthening appropriate citywide policies, resources, services and legal protections; assuring reasonable accommodations; and building informed and accurate public perception about people with disabilities." [More Information on Disabilities Network of New York City]
    
    
12. Divas with Disabilities Project
    The Divas with DisAbilities Project (DWDP) is an effort to show that African American women with physical disabilities, chronic medical conditions, and congenital deformities are more than just their wheelchairs, prosthesis, canes, and limps. Women of color with disabilities are, in fact, Divas (Dynamic, Inspirational, Victorious, Achieving Sisters) with DisAbilities and are endowed with beauty, brains, and talents. DWDP is the brain child of Dr. Donna R. Walton, founder and CEO of Leggtalk, Inc. Divas with Disabilities aims to showcase the beauty, diversity and normalcy of this community with the goal of impacting and transcending the definition of what disability looks from our perspectives. [More Information on Divas with Disabilities Project]
    
    
13. ENABLE (United Cerebral Palsy and Handicapped Children's Association of Syracuse, Inc.)
    The mission of Enable, also known as the United Cerebral Palsy and Handicapped Children's Association of Syracuse, Inc., is to enable people with disabilities to participate fully in all aspects of life. Enable provides assessment, training, therapy, and support for nearly 2,000 children and adults with disabilities and their families annually. Enable empowers people with disabilities to achieve their goals at home, school, work, and play. In 1980, the Schneier Communication Unit began operation. [More Information on ENABLE (United Cerebral Palsy and Handicapped Children's Association of Syracuse, Inc.)]
    
    
14. Epilepsy Foundation of America
    [More Information on Epilepsy Foundation of America]
    
    
15. Facing Disability for Families Facing Spinal Cord Injuries
    FacingDisability.com is designed to provide information and support for people with spinal cord injuries (SCI) and the members of their families. Facing Disability has more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. [More Information on Facing Disability for Families Facing Spinal Cord Injuries]
    
    
16. I CAN
    I CAN is a children’s communication charity in the United Kingdom. It works to foster the development of speech, language and communication skills in all children, with a special focus on children with communication disabilities. It has programs to create communication friendly settings for children in their early years; deliver specialist therapy and education for children with the most severe and complex difficulties; help professionals from across the children’s workforce to better support children’s communication needs through training and information services; and help parents access the information that they need to support their child. I CAN also works to ensure that the needs of children with communication disabilities are taken into account in all children’s policy, and it carries out research to find the best ways to support these children. [More Information on I CAN]
    
    
17. International Association of Laryngectomees
    [More Information on International Association of Laryngectomees]
    
    
18. Leonard Cheshire Disability
    Leonard Cheshire Disability provides a wide variety of services in the UK to support people with disabilities. These services include care homes, supported living, domiciliary support, day services, resource centres, rehabilitation, respite care, personal support and training and assistance for those looking for work. They also actively campaign for the civil and human rights of disabled people. [More Information on Leonard Cheshire Disability]
    
    
19. Living with ALS
    Created as a companion website to the living-with-als Yahoo Group for ALS patients, caregivers, families, and friends, this website features equipment reviews and tips on do-it-yourself projects, product selection, remodeling, easy-to-swallow meals, and other issues related to living with amyotrophic lateral sclerosis. [More Information on Living with ALS]
    
    
20. Mary Mwaniki Foundation
    The Foundation is registered in Kenya as a charity with a mission to empower the persons with spinal cord injuries through psychosocial approaches, training, networking, adaptive equipment distribution, individual and peer support groups therapy leading to a holistic transformation in order enhance their social-economic and psychosocial productivity and self-eeficacy. [More Information on Mary Mwaniki Foundation]
    
    
21. Muscular Dystrophy Association
    The Muscular Dystrophy Association provides financial support for research, medical care, and equipment. It also sponsors support groups and summer camps. Its focus includes muscular dystrophy and other neuromuscular diseases, and it has a division for amyotrophic lateral sclerosis (ALS). Services to enhance mobility and independent living are available in each community through MDA’s local network of chapters and field offices. When medically prescribed by the local MDA clinic physician, MDA assists with the purchase of wheelchairs, leg braces, and communication devices. All those for whom a wheelchair, leg braces, or communication device have been prescribed, regardless of age, education or employment status, are eligible for MDA assistance (once registered) when the equipment is prescribed by an MDA clinic physician in relation to an individual’s neuromuscular disease. In addition to utilizing whatever medical insurance may be applicable, the person for whom the equipment has been prescribed or that person’s family may be asked to assist with its purchase through personal resources. The maximum allowable assistance toward the purchase of a wheelchair, leg braces or a communication device is established by MDA annually. Through its Equipment Loan Program, MDA provides, to the extent feasible and when available, good-condition recycled wheelchairs and other durable medical equipment when medically prescribed in relation to an individual’s neuromuscular disease. When the individual for whom it was prescribed no longer needs the equipment, families are encouraged to return it to MDA for use by others. Through its local chapters and field offices, MDA accepts durable medical equipment for distribution through the Association's loan program. The Association assists with payment toward the cost of repairs/modifications to all wheelchairs and leg braces routinely authorized for MDA payment. The amount allowable toward repairs/modifications is established by the Association annually. [More Information on Muscular Dystrophy Association]
    
    
22. Muscular Dystrophy Family Foundation
    The Muscular Dystrophy Family Foundation is a national organization that provides adaptive equipment, clinic services, advocacy, and resources to children, adults, and family members effected by more than 40 neuromuscular diseases. Staff members are available 24 hours per day, seven days per week, 365 days a year. [More Information on Muscular Dystrophy Family Foundation]
    
    
23. National Aphasia Association
    Aphasia is often associated with stroke and brain injury. The NAA offers information on the medical causes of aphasia, contacting support groups and local assistance organizations, living with aphasia or someone who has aphasia, and the latest medical research. They also offer a semiannual newsletter, and opportunities to connect with others through a pen pal program. [More Information on National Aphasia Association]
    
    
24. National Ataxia Foundation
    The National Ataxia Foundation (NAF) is a nonprofit, membership-supported organization established in 1957 to help individuals with ataxia and their families. The Foundation's primary purpose is to support promising ataxia research and to provide vital programs and services for ataxia families. The Foundation has developed an extensive library of NAF brochures, fact sheets, books, and other educational material relating to ataxia. [More Information on National Ataxia Foundation]
    
    
25. OASIS @ MAAP
    The Online Asperger Syndrome Information and Support (OASIS) center has joined with MAAP Services for Autism and Asperger Syndrome to create a single resource for families, individuals, and medical professionals who deal with the challenges of Asperger Syndrome, Autism, and Pervasive Developmental Disorder / Not Otherwise Specified (PDD/NOS). [More Information on OASIS @ MAAP]
    
    
26. Opportunities Unlimited of Niagara
    The Niagara County chapter of NYSARC, Inc. (formerly known as the New York State Association for Retarded Children) is the largest not-for-profit organization in Niagara County providing programs and services to people with mental retardation or developmental disabilities, from birth through seniors, and their families. [More Information on Opportunities Unlimited of Niagara]
    
    
27. Sight-Hearing Encouragement Program
    The Sight-Hearing Encouragement Program (SHEP) was launched in August 2011 by Cassandra Oakes, who is deaf-blind. The goals of the program are to encourage independence, teaching the power of positive thinking and attitude, and advancing the abilities and skills for people who are deaf-blind. SHEP provides a 5-step assessment program for deaf-blind clients, and the program will train each individual in the basics of braille reading, computer skills, and tactile communication. [More Information on Sight-Hearing Encouragement Program]
    
    
28. Speaking Differently
    Speaking Differently is an organization for persons with disabilities who communicate using augmentative and alternative communication (AAC) methods, their families, friends and those who work with them. [More Information on Speaking Differently]
    
    
29. Sprout
    "Sprout is a private, non-profit organization dedicated to helping individuals with developmental disabilities and mental retardation grow through challenging and safe travel experiences." Based in New York City, the programs are available to people with MR/DD and the agencies that serve them throughout the United States. Participants have the opportunity to experience age-appropriate, recreational and leisure activities in a small group setting. By offering these experiences, through these activities, the organization seeks to enhance the mobility, self-confidence, and socialization of our participants. And through community-based activities, Sprout strives to break down some of the barriers that exist between participants and the general public. The organization offers a vacation program for adults, custom-designed trips for other organizations, and programs and activities based in New York City. Sprout also offers a Make-A-Movie program which offers people with developmental disabilities the opportunity to star in and be part of the creative video-making process. Sprout also sponsors an anual film festival and the Sproutstock music festival. [More Information on Sprout]
    
    
30. Vestibular Disorders Association
    "VEDA is a nonprofit organization that provides information to the public and health professionals about inner-ear balance disorders such as Meniere's disease, BPPV, and labyrinthitis. Symptoms of vestibular impairment may include dizziness, imbalance, vertigo, nausea, and fuzzy vision and may be accompanied by hearing problems, fatigue and changes in cognitive functioning. VEDA offers education and support through its books, videos, resource lists, short publications and membership services." The site also offers a national list of support groups. [More Information on Vestibular Disorders Association ]
    
    
31. Williams Syndrome Changing Lives Foundation
    The Williams Syndrome Changing Lives Foundation is a non-profit foundation centered on increasing Williams Syndrome awareness and educating families, the public, physicians and therapists. The foundation was formed to enhance the lives of children and adults living with a diagnosis of Williams Syndrome by providing financial assistance with medical, therapeutic, recreational needs and other developmental resources. In addition, the Williams Syndrome Changing Lives Foundation provides support for individuals, parents and families through support groups, outreach and sponsored functions. [More Information on Williams Syndrome Changing Lives Foundation]
    
    
32. YouInspire
    YouInspire is a support community where people with disabilities can post videos to share their experiences and provide support and encouragement to others in the disability community. YouInspire also includes people facing serious medical challenges as well as survivors of such challenges. [More Information on YouInspire]
    
    

View State Specific Organizations

Conferences                                                         Return to top of page

Past Conferences                                                         Return to top of page

1. 2012 Annual Family Cafe
   June 15, 2012 to June 17, 2012 in Orlando, Florida, United States
   The 14th Annual Family Cafe will provide a venue where individuals with all types of disabilities and their families from all regions of Florida can gather information about available services and how to best access them. It offers families access to policy-making officials, exposure to a range of public and private resources, and opportunities to find support by networking with other families. [More Information on 2012 Annual Family Cafe]
   
   
2. 2007 C.P. Conference IV: "Finding Our Power Claiming Our Place"
   October 19, 2007 to October 22, 2007 in Arlington, Virginia, United States
   The 2007 C.P. Conference IV will focus on issues and concerns of adults with cerebral palsy. Roundtable discussions will be conducted so that each participant has an opportunity to share. A facilitator will lead each discussion, and most discussions will have an expert in the subject under discussion who serves as a resource person for participants. [More Information on 2007 C.P. Conference IV: "Finding Our Power Claiming Our Place"]
   
   

News                                                         Return to top of page

1. Stroke Family
   Jan 11, 1999
   Using the latest technology, a new organization called Stroke Family helps stroke survivors practice talking at home with their computers. To find out more about how this program helps someone with aphasia re-learn speech, go to the Stroke Family website: http://www.strokefamily.org. From there, you can try the demo, or subscribe to the service. If you have questions, you can call Mike Schacker at 914/679-3717. [More Information on Stroke Family]