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General Resources

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 & Recreation

Assistive Technology

Ataxia-Related Books

Disability Issues

Disability Issues – Social Security Benefits

Employment & Education

Financial Planning

Gene Therapy

Insurance

Medical Information

Mental Health

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

Care Patrol

 

Accessible Travel & Recreation

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

 

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

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?

ADA National Network

ADA Employer Resources

Equal Employment Opportunity Commission

Social Security Administration

U.S. Department of Labor

U.S. Department of Education

School to Employment Program

Disability Link

Employer Assistance and Resource Network on Disability Inclusion

Recruit Disability

Enable America

U.S Office of Personnel Management

National Telecommuting Institute

7 Tips for Job Searching – AARP

 

Financial Planning

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

 

Gene Therapy

genehome

Global Genes: Cell and Gene Medicine 

 

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

RARE EDU

How to Receive Incontinence Supplies through Medicaid

 

Mental Health

Ataxia Support Group Meetings

Angel Aid

The Compassionate Friends

Rare Disease Help Lines

Child Life Professionals

Center for Disease Control

Health and Human Services

For immediate help: Call the National Suicide Prevention Lifeline at 1-800-273-8255 or text SIGNS to 741741 for the Crisis Text Line.

 

Physical Therapy/Exercise

Adaptive Skiing Resource Guide

 

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

Brigadoon Service Dogs

Can Do Canines

Canine Partners of the Rockies

Paws With a Cause

Service Dogs, Inc.

The Service Dog Project (SDP)

 

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.

Patient Airlift Services

Wings of Hope

 

Rare Caregiver Respite Program 

Email for Information – This program provides financial assistance to the caregiver to attend a conference or event. Awards are up to $500.

 

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

Rare Kids Network

Under 30 with Ataxia Facebook Gro

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