Mary Chapman,  features writer—

In 2007, 8-year-old Isabel Maugee began having gait problems while playing soccer. Caroline Maugee and her husband, Eric, thought their daughter had knock knees. A year later, the couple was shocked when Isabel and her twin brother, Christian, were diagnosed with a disease they had never heard of —…

Bill Nye is back in the lab, with the host of the popular 1990s science education TV show “Bill Nye the Science Guy” now starring in a National Ataxia Foundation (NAF) campaign focused on raising awareness and understanding of Friedreich’s ataxia (FA). FA is a rare, inherited, and progressive disorder. It…

Note: This story has been updated March 6, 2025, to correct a quote from Mindy Henderson, MDA vice president of disability outreach and empowerment. The Muscular Dystrophy Association (MDA) is once again hosting its annual gathering, the MDA Clinical & Scientific Conference. The 2025 event will take place…

A live, virtual roundtable on Nov. 6 at 6 p.m. EST will explore how people with Friedreich’s ataxia (FA) and caregivers can work together to deal with the everyday challenges of FA while living full lives. The free webinar, “Stronger Together: Patient and Caregiver Collaboration in FA,” is presented…

The nonprofit Critical Path Institute (C-Path) and the Friedreich’s Ataxia Research Alliance (FARA) are partnering to bolster the library of data from people with Friedreich’s ataxia (FA) and make it more accessible for researchers to develop new treatments. The effort will involve integrating additional FA datasets into C-Path’s…

Patients and caregivers will hear the latest news on Friedreich’s ataxia (FA) research and management at an April 27 meeting in Baton Rouge, Louisiana. The Friedreich’s Ataxia Research Alliance (FARA) will host its FA Research Reception at the Hilton Baton Rouge Capitol Center. Topics for the event…

Friedreich’s Ataxia News consistently covered the latest in scientific research, treatment development, and clinical studies for Friedreich’s ataxia (FA) throughout 2023. Here are the top 10 most widely read stories of last year: No. 10 – Dosing starts in 2nd patient group in trial of gene therapy candidate…

Sparking conversations about ataxia — a group of disorders that include Friedreich’s ataxia believed to affect 26 of every 100,000 children globally — will be the chief aim of this year’s annual International Ataxia Awareness Day (IAAD), set for Sept. 25. The 23-year-old event is organized by the…

The Friedreich’s Ataxia Research Alliance (FARA) has announced upcoming deadlines for its grants program — with awards of up to $250,000 on offer — for scientists seeking to advance research into the progressive disorder that primarily affects nerves and muscles. FARA’s research program supports basic, translational, and clinical…

The third United Against Ataxia Hill Day will take place virtually Sept. 29, an event set aside to heighten awareness and support legislation that affects the ataxia community, including those with Friedreich’s ataxia (FA). All U.S. residents are invited to participate in the day-long advocacy event, which is a…