Friedreich’s ataxia (FA) places a substantial burden on both patients and caregivers, impacting physical, emotional, social, and financial aspects of their lives, a U.S. study found. Patients, who needed about 55 hours of caregiver support each week, reported a significant impact of the disease on their mobility, self-care, work…
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Four weeks of treatment with the highest tested dose of the experimental therapy DT-216P2 was associated with improvements in functional scores for four people with Friedreich’s ataxia (FA) in an early clinical trial. Data also indicate that DT-216P2 was generally well tolerated and showed biomarker activity consistent with increasing…
A combination of exercise and an energy-boosting supplement may improve physical fitness in children and adults with Friedreich’s ataxia (FA), although the added benefit of the supplement over exercise alone remains unclear, according to results from a clinical trial. Those who participated in a 12-week program combining aerobic and strength…
Treatment with nomlabofusp, Larimar Therapeutics’ experimental therapy for Friedreich’s ataxia (FA), leads to increased frataxin protein levels in cells throughout the body — changes that, according to new research, may be monitored using easily accessible skin or cheek cell samples. The new findings, based on analyses in mouse,…
May is Friedreich’s Ataxia Awareness Month, and patients, families, and caregivers are coming together to support one another and encourage local communities to help meet the ongoing need for funding to cure this disease. Friedreich’s Ataxia Day is May 16. Leading the efforts is the Friedreich’s Ataxia Research Alliance…
Doctors’ early diagnosis of advanced heart failure in a man with Friedreich’s ataxia (FA) allowed for timely multidisciplinary evaluation that made heart transplant a viable and successful treatment option, according to a U.S. case report. More than two years after surgery, the man “continues to do well, living with his…
A hotel ballroom in Orlando filled with laughter as comedian Fiona Cauley performed at the banquet on the final night of the 2026 Annual Ataxia Conference (AAC). The audience responded enthusiastically to her set, which drew on personal experience. Cauley, who is living with Friedreich’s ataxia (FA) and…
Alyssa Hammers and her healthcare providers had been trying to determine the cause of her coordination problems, without success. Then, her cousin showed her a TikTok video about living with Friedreich’s ataxia (FA). Hammers immediately recognized the similarities to her symptoms. Despite initial skepticism from her neurologist, Hammers was…
Living with Friedreich’s ataxia (FA) can make managing daily activities and maintaining independence more difficult, especially as the disease progresses over time. For example, tremors or other FA symptoms can interfere with getting dressed, cooking, or brushing teeth. Elizabeth Foss, an occupational therapist and one of the…
When you’re living with Friedreich’s ataxia (FA), maintaining independence can become more challenging over time due to mobility challenges and other symptoms. At the 2026 Annual Ataxia Conference (AAC) in Orlando, Florida, the session “Rehabilitation Strategies & Mobility Devices” discussed the value of exercise in the management of ataxias, including…
Recent Posts
- Friedreich’s ataxia places heavy daily burden on patients, caregivers: Study
- Living with FA has taught me the difference between pain and suffering
- While living with FA, we get used to dealing with setbacks
- DT-216P2 shows early signs of benefit in Friedreich’s ataxia clinical trial
- I am taking a lesson from the Stoics and learning to let go of unrealistic goals