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Voices of Friedreich's Ataxia (FA)

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International Ataxia Awareness Day

On December 12, 2022 By voicesoffa
  • Youtube Videos

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

On December 10, 2022 By voicesoffa
  • Youtube Videos

Current Stage of DevelopmentAn open label, phase 2 trial, with the primary objective of testing the safety and tolerability of

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Scientists Receive $4.8M to Pursue Gene Therapy for ‘Incurable’ Disease

On December 9, 2022 By voicesoffa
  • Youtube Videos

On November 29, 2022, the California Institute for Regenerative Medicine (CIRM) awarded Dr Stephanie Cherqui and colleagues at the University

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‘This Too Shall Pass,’ We Say — but It’s Not Always True

On December 8, 2022 By voicesoffa
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The human experience is such a beautifully complicated journey. We all learn, grow, develop opinions, follow tendencies, change, adapt, and

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Avoiding a Victim Mentality While Living With FAAvoiding a Victim Mentality While Living With FA

On December 7, 2022 By voicesoffa
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The effects of Friedreich’s ataxia (FA) are vicious, relentless, widespread, and undeniable. FA uses my own body to slowly defeat

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To My Community: Your Journey With FA Matters By Kendall Harvey

On December 6, 2022 By voicesoffa
  • Youtube Videos

Battling a degenerative disease, especially one so rare that most people haven’t heard of it, can be a lonely journey.

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Key uses of FA Global Patient Registry

On December 5, 2022 By voicesoffa
  • Youtube Videos

Opportunities to communicate with the patient community over time, while maintaining patient confidentialityEnhanced patient recruitment through targeted recruitment notices to

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What Causes the Symptoms of FA?

On December 3, 2022 By voicesoffa
  • Youtube Videos

The protein associated with F A, called frataxin, is made by the FXN gene and is required for proper functioning

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Patient-Reported Impact of Symptoms in Friedreich Ataxia

On December 2, 2022 By voicesoffa
  • Youtube Videos

The aim of this study was to determine the prevalence and relative importance of symptoms experienced by children and adults

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What the Patient Registry Doesn’t Do?

On December 1, 2022 By voicesoffa
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Patient registry information is never used for fundraising.Patient registry information is not shared with researchers and pharmaceutical companies without appropriate

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