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Thank you for submitting your comments for the FDA! Troriluzole, an experimental drug being developed by Biohaven, completed Phase 3 clinical trials last year. While the primary endpoint assessing benefit across all Spinocerebellar Ataxia (SCA) types was not met, Biohaven believes the results show benefit among participants with SCA Type 3 Read More…
The FDA recently the FDA announced approval for SKYCLARYS (omaveloxolone) for the treatment of Friedreich’s Ataxia. This is the first and only FDA-approved prescription medicine for Friedreich’s Ataxia. NAF is thrilled about this announcement and proud to have been involved in the process, from clinical trial recruitment to educating our community about Read More…
The Coordination of Rare Diseases at Sanford (CoRDS) coordinates the advancement of research into 7,000 rare diseases via data sharing and study recruitment. CoRDS works with advocacy groups such as the National Ataxia Foundation, individuals who have a diagnosis of any form of Ataxia, and researchers who are studying various Read More…
In our continued commitment to improving clinical care and accelerating treatment development, we’re proud to announce NAF’s new Ataxia Centers of Excellence (ACE) designation! The ACE program will recognize exceptional centers providing comprehensive care and services for individuals affected by Ataxia and their families. In addition to providing expert clinical Read More…
Guest Author: Amber Trzeciak, Cadent Therapeutics Clinical trial phases can be a confusing concept to understand. The purpose of clinical trials is to determine how a drug or device (intervention) will interact with a human being. Trials are regulated by our governmental agency the FDA (US Food and Drug Administration). Read More…
Working with your doctor to obtain a diagnosis can be difficult, especially with a rare disease. Medical history, family history, and a neurological evaluation are used to diagnose Ataxia. Various blood tests may also be used to rule out other disorders. Your doctor may recommend genetic testing if a hereditary Read More…
Guest Authors: Sheng-Han Kuo MD, Chen-Ya Yang, MD, MPH, and Geraldine Yu, PT, DPTTechnical Support: Tiffany Chen BS, Johns Hopkins University Ataxia is a neurologic disorder that affects people across all ages. People living with Ataxia may experience problems including incoordination of movement, slurred speech, poor balance, and gait abnormalities. Read More…
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