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General Resources

Links to other organizations or programs that support the community.

Connecting You to Social Services & Other Resources

Patients and caregivers living with Ataxia may need help outside the scope of services that NAF provides. These concerns – such as social and economic issues — can be just as important as accessing care. They are an important part of living better with the disease. To try and fill this gap, NAF has partnered with Unite Us to help connect patients and caregivers with social services that can help them.

Unite Us has a network of social service programs all around the United States that can help people find local resources that may help with things like health insurance/benefits assistance, clothing and household goods, food or transportation assistance, education or employment services, housing/utilities services, respite care, legal/financial counseling, mental health and other services. Fill out the form below and indicate which services you need so they can best identify how to direct you to help!

Please note: Request forms are not accessible by NAF staff. You are submitting your information to Unite Us, a third-party service provider. Please read their consent information carefully and only sign if you agree to their terms.

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

Accessible Travel & Recreation

Assistive Technology & Durable Medical Equipment

Ataxia-Related Books

Disability Services

Employment & Education

Financial Planning

Gene Therapy

Health Coverage

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

Accessible Space, Inc

Adapting a Home for Disability Accessibility

Tetra Society of North America

Centers for Independent Living Directory 

Intro to Centers for Independent Living 

Easterseals

Accessible Travel & Recreation

Traveling with Ataxia

TSA Cares

Air Travel with an Assistive Device

AMBUCS-Creating Mobility and Independence for People 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

WheelchairTravel.org

Driving With a Neurological Disability 

Mobility Works: Automotive Mobility Assistance Programs

Tetra Society of North America 

Equine Therapy for Ataxia 

Tai Chi for Ataxia 

Aquatic Therapy for Ataxia 

Chair Yoga for Ataxia 

Adaptive Skiing Resource Guide

Assistive Technology & Durable Medical Equipment

CameraMouse: Allows a computer user to move the cursor with their eye movements

The Wheelchair Foundation

myMessageBanking

Disability Services

National Rehabilitation Information Center

Centers for Disease Control – Disability and Health

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.

Your Path to Government Benefits

Social Security Disability Benefits Q&A

Benefits For People With Disabilities

Social Security Compassionate Allowance Information

ADA National Network

Employment & Education

Centers for Independent Living Directory

America’s Job Exchange

College Scholarships and Financial Aid for Students with Disabilities

Graduate School Success for Students with Disabilities.

Job Access

Job Accommodation Network

The Viscardi Center – Empowering children and adults with disabilities

Equal Employment Opportunity Commission

U.S. Department of Labor

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

ResumeBuilder – Resume and Employment Guide for People with Disabilities

Employment Guidelines For Persons With Disabilities

United Way

Financial Planning

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

Financial Planning FAQ

Special Needs Alliance

Huntington’s Disease Society of America – Financial and Legal Preparation Checklist

MassMutual SpecialCare – Our Letter of Intent for Our Loved One

Webinar: Introduction to Disability Services and Financial Planning

Gene Therapy

genehome

 

Health Coverage

NORD Claim Your Care Program

NORD Patient Assistance

State Health Insurance Assistance Program (SHIP)

Medical Information

Ataxia Webinars

SCASource

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

Global Genes – Mental Health & Well-Being

Health and Human Services

Mental Health America – Get Help

Mental Health First Aid

NIH – Help for Mental Illnesses

SAMHSA – National Helpline

988 Suicide & Crisis Lifeline

For immediate help: Call, text, or chat the National Suicide Prevention Lifeline at 988. https://988lifeline.org/get-help/ 

Physical Therapy/Exercise

Exercise for Ataxia

Coordinative Physiotherapy for Patients with Ataxia 

Benefits of Rehabilitative Services

Little Steps Big Gains Exercises for Ataxia

Chair Yoga for Ataxia

Moving Forward 4 Ataxia

The Ataxian Athlete Initiative

Service Dogs

Using a Service Dog for Ataxia

4 Paws for Ability

Assistance Dogs International: is a coalition of not for profit organizations that train and place Assistance Dogs 

Canine Partners for Life

Service Dog Project, Inc.

Brigadoon Service Dogs

Can Do Canines

Canine Partners of the Rockies

Paws With a Cause

Service Dogs, Inc.

Sibling Resources

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

Sibling Support Project

Spanish Resources

¿Qué es la ataxia? 

Spanish Ataxia Fact Sheet

Spanish Speaking Ataxia Support Group – Apoyo para la Ataxia en Español

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.

ADA Spanish Language Outreach Project

Travel Assistance for Medical/Research Purposes

Air Charity Network

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

Caregiver Respite Programs & Resources 

Ataxia Care Partners Resources

NORD Caregiver Resources

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

Under 30 with Ataxia Facebook Group

Rare Youth Resources

Teens Living with Chronic Illness Support Group

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