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
• Ataxia-Related Books
• Disability Issues
• Disability Issues – Social Security Benefits
• Employment & Education
• Financial Planning
• Genetic Information
• Insurance
• Medical Information
• Physical Therapy/Exercise
• Service Dogs
• Sibling Resources
• Spanish Resources
• Travel Assistance for Medical/Research Purposes
• Wish Granting Resources
• Youth Opportunities

Accessible Living & Workplace

• • Accessible Space, Inc

• • The Equal Rights Center Discrimination Complaint Form

• • Independent Living and Community Participation from the National Rehabilitation Information Center

• • 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

Accessible Travel

• • AMBUCS-Creating Mobility and Independence for People with Disabilities

• • Aviation Consumer Protection – Passengers with Disabilities

• • How To: Navigate an Airport

• • The Society for Accessible Travel & Hospitality (SATH), raising awareness of the needs of travelers with disabilities.

• • Special Needs at Sea

• • Splore: Accessible Outdoor Adventures

• • TSA Cares: helpline number designed to assist travelers with disabilities and medical conditions

• Wilderness Inquiry-Custom Group Adventures

Assistive Technology

• • ABLEDATA: Information on assistive Technology

• • 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.

• • The Pass It On Center – Helping People with Disabilities get affordable assistive technology

• • The Wheelchair Foundation

Disability Issues

• • Centers of Disease Control – Disability

• • Employment Guidelines For Persons With Disabilities

• • The Equal Rights Center: advancing the rights of people with disabilities

• • Genetic Information Non-Discrimination Act

• • Information and technical assistance on the Americans with Disabilities Act.

• • Interagency Committee on Disability Research

• • Your Path to Government Benefits

Disability Issues – Social Security Benefits

• • Advocates for Individuals with Disabilities

• • Benefits For Children With Disabilities

• • Benefits For People With Disabilities

• • Faces And Facts Of Disability

• • How To Apply For Disability Benefits

• • Social Security Compassionate Allowance Information

Employment & Education

• • A Guide to the Individualized Education Program

• • Ability Links

• • America’s Job Exchange

• • College Scholarships and Financial Aid for Students with Disabilities

• • Emerging Leaders summer Internship Program for College Students with Disabilities

• • Graduate School Success for Students with Disabilities.

• • Incight’s Mission: To educate and employ people with disabilities

• • Job Access

• • Job Accommodation Network

• • Unites States Department of Labor

• • The Viscardi Center – Empowering children and adults with disabilities

• • What are Public Schools Reqired to Do When Students with Disabilities are Bullied?

Financial Planning

• • Disabled and Alone: A non-profit organization established to help families provide a secure future for their loved ones with a disability.

• • MetLife Center for Special Needs Planning

• • Personal Finance Guide for People with Disabilities

• • Possibilities: A Financial Resource for Parent of Children with Disabilities

• • Protected Tomorrows

Insurance

• • Foundation for Health Coverage Education

• • National Disability Navigator Resource Collaborative

Medical Information

• • American Academy of Neurology Position Statement: Use of Medical Marijuana for Neurologic Disorders

• • NCBI Pub Med: Online search of medical literature (Pub. Med)

• • Palliative care: Specialized medical care for people with serious illnesses

Physical Therapy/Exercise

• • Adaptive Skiing Resource Guide

• • Coordinative Physiotherapy for Patients with Ataxia

• • Disabled Sports USA

• • National Center on Health, Physical Activity and Disability (NCHPAD)

• • Physical Therapy Brings Motion to Life by APTA

• • Professional Association of Therapeutic Horsemanship International (PATH Intl.)

• • USA Today: “Doctors get patients to go to ‘Wiihab’

• • Wheelchair Yoga Presentation by Ralph Miller

Service Dogs

• • 4 Paws for Ability

• • 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

• • Canine Partners for Life

• • Service Dog Project, Inc.

• • TOP DOG: a non-profit organization which teaches people with a physical disability to train their own dogs to help them.

Sibling Resources

• • Sibling Leadership Network: providing support for siblings of individuals with disabilities

• • Sibling Support Project

• • University of Michigan Health System – Siblings of Kids with Special Needs

Spanish Resources

• • Ataxia Mexico

• • El Centro para la Investigación y Rehabilitación de las Ataxias Hereditarias (CIRAH)

• • 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.

• • Los Hechos Acerca de la Ataxia de Friedreich
    La Asociación de la Distrofia Muscular

• • Office of Rare Diseases Research

• • Para Entender Sus Genes: Una Guía al Asesoramiento Genético

• • Seguro Social El sitio de Internet oficial de la Administración del Seguro Social de los EE. UU.

Travel Assistance for Medical/Research Purposes

• • Air Charity Network

• • Mercy Medical Angels: America’s Charitable Medical Transportation System

• • Miracle Flights for Kids helps fly low-income children struggling with serious debilitating diseases to specialized medical treatment centers across the U.S.

• • Wings of Hope

Wish Granting Resources

• • Benefit4Kids

• • Challenge Air

• • Children’s Wish Foundation

• • Kids Wish Network

• • Make A Wish

• • Marty Lyons Foundation

• • A Special Wish Foundation

• • Sunshine Foundation

Youth Opportunities

• • ABC Medical offers Scholarships

• • College Scholarships and Financial Aid for Students with Disabilities

• • Free Membership to NORD for undergrad, graduate and medical students

• • Next Step – Program for youth living with a rare genetic disease

• • Kids As Self Advocates – Teens and young adults with disabilities advocating for themselves

• • The Shire ACES Scholarship Program