Resources for people with Friedreich ataxia (FA)

Friedreich ataxia (FA) is a genetic disorder that causes progressive damage to the nervous system and affects a person’s movement, balance, and coordination. It also causes damage to cardiac muscle (the muscle tissue that makes up the heart) and causes heart problems. It is an uncommon condition, affecting approximately 1 in 40,000 people worldwide (and approximately 1 in 50,000 people in the United States).

People with FA require ongoing care from a team of healthcare providers with different specialties. A team often includes a neurologist, genetic counselor, physical and occupational therapists, speech therapist, and others. Counseling and working with a mental health professional are also recommended for people with FA and family members.

Resources and support

For anyone affected by FA, it will help to have resources and support. Resources and support can mean knowing where to look when you have a question—like “How do I find a specialist?” or “Where do I learn about new therapies and clinical trials?” Resources and support can also mean patient education, financial assistance, and opportunities to connect with other people whose lives have been affected by FA or similar conditions.

The resources below can help you get started:

National Ataxia Foundation (NAF) New and emerging therapies are an important topic for anyone who has been affected by FA. The National Ataxia Foundation (NAF) provides up-to-date information on approved treatments, a listing of clinical trials and research studies related to FA and other forms of ataxia, and news about research. The site also features a database of support groups for people affected by FA, including in-person support groups and virtual support groups.

Friedreich’s Ataxia Research Alliance (FARA) A partner organization to the NAF, The Friedreich’s Ataxia Research Alliance is a non-profit organization dedicated to raising awareness about FA, raising funds for FA research, and aligning individuals, organizations, and resources to find treatments for FA. The site features pages of information on living with FA, including a patient registry, a guide to clinical trials, and its own resource page, where you can find information related to parent support groups, education, sports, employment, and many other aspects of life with FA. The site also features information on fundraising and advocacy.

Friedreich’s Ataxia Parent Group Most people who are diagnosed with FA are diagnosed before the age of 25 years old, with many diagnosed as children or adolescents. Many require help from parents and other family members. The Friedreich’s Ataxia Parent Group provides a parent-focused perspective on the condition, with information on different aspects of caregiving, including aspects that are not often covered on other sites—with pages on beds, footwear, clothing, home adaptations for young people living with FA, coping with caregiver stress, and finances. There is also a mailing list that connects parents and guardians of kids living with FA.

National Organization for Rare Disorders (NORD) The National Organization for Rare Disorders, or NORD, is a good starting point for anyone who needs information about a rare health condition, including causes, symptoms, standard therapies, and clinical trials. The NORD pages on FA also include a Programs & Resources section, with information on where to apply for financial aid and respite support for caregivers.