NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
SIGN THE PETITION
NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
SIGN THE PETITION
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.
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:
Accessible Travel & Recreation
Assistive Technology & Durable Medical Equipment
Travel Assistance for Medical/Research Purposes
Adapting a Home for Disability Accessibility
Tetra Society of North America
Centers for Independent Living Directory
Intro to Centers for Independent Living
Air Travel with an Assistive Device
AMBUCS-Creating Mobility and Independence for People with Disabilities
Driving With a Neurological Disability
Mobility Works: Automotive Mobility Assistance Programs
Tetra Society of North America
Adaptive Skiing Resource Guide
CameraMouse: Allows a computer user to move the cursor with their eye movements
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
Centers for Independent Living Directory
College Scholarships and Financial Aid for Students with Disabilities
Graduate School Success for Students with Disabilities.
The Viscardi Center – Empowering children and adults with disabilities
Equal Employment Opportunity Commission
Employer Assistance and Resource Network on Disability Inclusion
U.S Office of Personnel Management
National Telecommuting Institute
ResumeBuilder – Resume and Employment Guide for People with Disabilities
Employment Guidelines For Persons With Disabilities
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
State Health Insurance Assistance Program (SHIP)
NCBI Pub Med: Online search of medical literature (Pub. Med)
Palliative care: Specialized medical care for people with serious illnesses
How to Receive Incontinence Supplies through Medicaid
Global Genes – Mental Health & Well-Being
Mental Health America – Get Help
NIH – Help for Mental Illnesses
For immediate help: Call, text, or chat the National Suicide Prevention Lifeline at 988. https://988lifeline.org/get-help/
Coordinative Physiotherapy for Patients with Ataxia
Benefits of Rehabilitative Services
Little Steps Big Gains Exercises for Ataxia
The Ataxian Athlete Initiative
Using a Service Dog for Ataxia
Canine Partners of the Rockies
Sibling Leadership Network: providing support for siblings of individuals with disabilities
Spanish Speaking Ataxia Support Group – Apoyo para la Ataxia en Español
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
Ataxia Care Partners Resources
ABC Medical offers Scholarships
College Scholarships and Financial Aid for Students with Disabilities
Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by Ataxia.
Join for FREE today! Become a part of the community that is working together to find a cure. As a member you will receive access to the latest Ataxia news with our e-newsletter and Generations publication.
