United in care: Your guide to FA support and resources

Last updated March 15, 2024, by Susie Strachan
Fact-checked by Patricia Silva, PhD

Finding people who understand what it’s like living with Friedreich’s ataxia (FA) can be essential when learning to accept your situation and how to move forward.

Connecting with others from the FA community may be particularly invaluable as this challenging disease progresses.

FA is a degenerative nervous system disease associated with a progressive loss of muscle control and coordination, as well as other symptoms such as speech difficulties, heart problems, and skeletal abnormalities. It is caused by mutations in the FXN gene.

By joining FA support groups, you can gain insights into the disease, practical support and advice, and strategies for managing FA in daily life.

The FA community — known as FAers — can also offer emotional support, provide links to resources such as information on FA treatment, and ensure you’re not alone in your health journey.

Finding a support group

FA support groups can connect you to a network of people who share similar experiences and challenges.

Start by talking with your healthcare providers about local support groups and online support groups. There are also national and international organizations that run support groups.

In the U.S.:

• The National Ataxia Foundation posts an interactive map of support groups by U.S. state or as a list.
• The Friedreich’s Ataxia Research Alliance (FARA) runs a parent support group (FAPG).

Internationally:

• Canadian provincial groups
• UK support groups.

Accessing online support

There are a number of ways to find online support groups. Start by looking at national organizations dedicated to FA or explore online forums and social media groups dedicated to the disease.

When joining online support groups, it's essential to ensure the platforms and communities are reputable and provide a safe and supportive environment.

Friedreich’s Ataxia News has forums where people in the FA community can interact as well as a Facebook page.

Useful information for people with FA

Friedreich's Ataxia News offers the latest news and research into the disease. It’s also a good resource for learning about living with FA. You can find information on educational topics such as guidance for parents, exercise and physiotherapy, and assistive equipment.

Additional online resources for people living in the U.S. include:

• Disability.gov has information and resources to help individuals with disabilities lead full lives as independently as possible.
• The Centers for Independent Living are nonprofit agencies offering services for maximizing the independence of people with disabilities.
• The Patient Advocate Foundation provides professional case management services to those facing chronic and debilitating conditions.

Financial assistance

There are a number of financial considerations for people with FA to prepare for, both now and in the future. This may include medical costs such as physician and therapist services, laboratory analyses, emergency room visits, prescription medications, home care, and long-term facilities.

When making a financial plan, start by checking with your employer or life insurance agent about benefits that may offer monetary support.

Government benefits are also available, including:

• Social Security Disability
• Supplemental Security Income
• Home-based care through Medicaid.

The FA Project provides financial assistance to people living with FA.

Other organizations that may be able to offer financial aid include State Pharmacy Assistance Programs, which are available in many U.S. states to help eligible individuals pay for prescription medications.

Some pharmaceutical companies may offer assistance in covering the cost of medications.

Internationally, Ataxia Canada offers financial support for the purchase of technical aids, adaptations, equipment, and other services. Canadian parents can also contribute to a Registered Disability Savings Plan for their child with FA.

Education and advocacy

FA symposiums such as the National Ataxia Foundation’s annual conference not only offer the latest information about research into the disease, they’re also a good way to meet fellow FAers.

The International Congress for Ataxia Research brings together researchers from around the world, along with patient advocacy groups.

You may be able to get updates about upcoming events by subscribing to newsletters or mailing lists of FA organizations, research institutions, or patient advocacy groups.

Becoming an advocate for FA allows you to play a role in raising awareness, influencing healthcare policies, raising funds for research, and helping others recently diagnosed with FA.

Connect with organizations dedicated to the disease, such as FARA, to talk about advocacy work.

FARA also runs the rideAtaxia event, a nationwide program of bike rides that welcomes people of all abilities to ride and to raise funds for FARA’s mission to treat and cure FA through research.

Staying informed

Talk with your healthcare team about the best way to manage your FA symptoms and to hear the latest news about treatments. You can discuss with your doctor your goals for treatment and how they can help you achieve them.

Your healthcare team may include physical, occupational, and speech therapists, who can address any mobility, functionality, and speaking issues. They can also help with learning how to use mobility aids and other assistive devices, and teach you exercises that strengthen your muscles.

Reading the latest information from Friedreich’s Ataxia News can also keep you informed about what is going on in the FA community.

Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.