General References
The following is a list of valuable ataxia related resources and information from other organizations. Clicking an item in the Index (below) takes you to links related to that heading:
Index
- Accessible Living & Workplace
- Accessible Travel
- Assistive Technology
- Disability Benefits
- Employment & Education
- Financial Planning
- Medical Information
- Physical Therapy
- Service Dogs
- Sibling Resources
- Spanish Resources
- Stem Cell Information
- Travel Assistance for Medical/Research Purposes
Disability Benefits
- Disability.gov: Federal government website that provides information on disability-related programs.
- Information and technical assistance on the Americans with Disabilities Act.
- Benefits For People With Disabilities
- How To Apply For Disability Benefits
- Benefits For Children With Disabilities
- Employment Guidelines For Persons With Disabilities
- Social Security Compassionate Allowance Information
- Interagency Committee on Disability Research
- United states Department of Health & Human Services
- Your Path to Government Benefits
Medical Information
- The Brain Matters.org: Get trusted answers to questions regarding neurological disorders
- NCBI Pub Med: Online search of medical literature (Pub. Med)
- Aetna InteliHealth: Consumer Health Information
- Medsite: Medical Search Engine
- Palliative care: Specialized medical care for people with serious illnesses
- Web MD: Medical Reference
- NIDCD: Dysphagia
- Source for Reliable Health Information from the Office of Disease Prevention and Health Promotion
Assistive Technology
- ABLEDATA: Information on assistive Technology
- Adaptive Market - Search, buy and sell adaptive equipment to fit your needs
- CameraMouse: Allows a computer user to move the cursor with their eye movements
- Create avatars using text-to-speech
- NRRTS: For consumers to identify qualified suppliers of high-quality rehabilitation technology to people with physical disabilities.
- Pass It On Center - A national Assistive Technology Reuse Center
Physical Therapy
- American Physical Therapy Association: physical therapy practice, research, and education
- Commit to Your Health: Workout DVD with FA patient and personal trainer Kerry Westfall
- National Center on Physical Activity and Disability (NCPAD)
- Professional Association of Therapeutic Horsemanship International (PATH Intl.)
- USA Today: "Doctors get patients to go to 'Wiihab'
Accessible Travel
- Aviation Consumer Protection - Passengers with Disabilities
- TSA - Travelers with Disabilities
- Special Needs at Sea
- Splore: Accessible Outdoor Adventures
- The Society for Accessible Travel & Hospitality (SATH), raising awareness of the needs of travelers with disabilities.
- TSA Cares: helpline number designed to assist travelers with disabilities and medical conditions
- Wilderness Inquiry-Custom Group Adventures
Travel Assistance for Medical/Research Purposes
Financial Planning
- Disabled and Alone: A non-profit organization established to help families provide a secure future for their loved ones with a disability.
- Possibilities: A Financial Resource for Parent of Children with Disabilities
- Protected Tomorrows
Employment & Education
- A Guide to the Individualized Education Program
- Incight“s Mission: To educate and employ people with disabilities
- Students Living with a Genetic Condition: A Guide for Parents
Accessible Living & Workplace
- The Equal Rights Center Discrimination Complaint Form
- Inclusion Solutions
- Independent Living Research Utilization: Provides expertise in Centers for Independent Living, ADA, Home and Community Based Services and Disability and Health issues.
- Tetra Society of North America
Service Dogs
- Assistance Dogs International: is a coalition of not for profit organizations that train and place Assistance Dogs
- The Assistance Dog United Campaign (ADUC) provides financial assistance to those needing an assistance dog.
- Canine Companions: a national nonprofit that enhances the lives of people with disabilities by providing highly-trained assistance dogs
- TOP DOG: a non-profit organization which teaches people with a physical disability to train their own dogs to help them.
Sibling Resources
- WikiADVOCACY – Sibling Support
- National Dissemination Center for Children with Disabilities – Sibling Issues
- Sibling Support Project
- University of Michigan Health System - Siblings of Kids with Special Needs
Spanish Resources
- Los Hechos Acerca de la Ataxia de Friedreich La Asociación de la Distrofia Muscular
- El Centro para la Investigación y Rehabilitación de las Ataxias Hereditarias (CIRAH)
- Federación de Ataxias de España (FEDAES)
- La Asociación Civil de ATaxias de ARgentina (ATAR)
- El Instituto Nacional de Investigación del Genoma Humano (NHGRI) ha creado el Glosario Hablado de Términos Genéticos para ayudar a entender los términos y conceptos utilizados en la investigación genética.
- Office of Rare Diseases Research
- Seguro Social El sitio de Internet oficial de la Administración del Seguro Social de los EE. UU.
