International Ataxia Awareness Day
International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and
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MIB-626
Current Stage of DevelopmentAn open label, phase 2 trial, with the primary objective of testing the safety and tolerability of
Scientists Receive $4.8M to Pursue Gene Therapy for ‘Incurable’ Disease
On November 29, 2022, the California Institute for Regenerative Medicine (CIRM) awarded Dr Stephanie Cherqui and colleagues at the University
‘This Too Shall Pass,’ We Say — but It’s Not Always True
The human experience is such a beautifully complicated journey. We all learn, grow, develop opinions, follow tendencies, change, adapt, and
Avoiding a Victim Mentality While Living With FAAvoiding a Victim Mentality While Living With FA
The effects of Friedreich’s ataxia (FA) are vicious, relentless, widespread, and undeniable. FA uses my own body to slowly defeat
To My Community: Your Journey With FA Matters By Kendall Harvey
Battling a degenerative disease, especially one so rare that most people haven’t heard of it, can be a lonely journey.
Key uses of FA Global Patient Registry
Opportunities to communicate with the patient community over time, while maintaining patient confidentialityEnhanced patient recruitment through targeted recruitment notices to
What Causes the Symptoms of FA?
The protein associated with F A, called frataxin, is made by the FXN gene and is required for proper functioning
Patient-Reported Impact of Symptoms in Friedreich Ataxia
The aim of this study was to determine the prevalence and relative importance of symptoms experienced by children and adults
What the Patient Registry Doesn’t Do?
Patient registry information is never used for fundraising.Patient registry information is not shared with researchers and pharmaceutical companies without appropriate