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FARAFARA Cure FA

 

News & Press Releases

Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.


Freidreich's Ataxia: The CHUM and its partners involved in an international study to better understand the disease and its progression over time

CHUM Staff
Uncoordinated movements, impaired speech caused by muscle weakness, diabetes and cardiomyopathy: Friedreich’s ataxia hits hard and early. This neurodegenerative orphan disease, for which no treatment exists, generally manifests between the ages of 5 and 15, initially affecting walking.

Occurring in 1 in 30,000 people, the disease is rare. To identify the best ways of monitoring its progression, a research network has been created. CHUM neurologist Antoine Duquette and his colleagues at the Centre de réadaptation Lucie-Bruneau are collaborating in an international study directed by Dr. David R. Lynch of the Children’s Hospital of Philadelphia.

Read the entire article HERE

Global Ataxia Advocacy Organizations Unite to Host International Ataxia Research Conference in Washington, DC

On November 14th-16th, the Friedreich’s Ataxia Research Alliance (FARA US), Ataxia UK, fara (Australia), and GoFar (Italy) will host the International Ataxia Research Conference (IARC) in Washington DC.


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Reata Announces Positive Topline Results from the MOXIe Registrational Trial of Omaveloxolone in Patients with Friedreich’s Ataxia

ACHIEVED PRIMARY ENDPOINT OF STATISTICALLY SIGNIFICANT IMPROVEMENT IN MFARS COMPARED TO PLACEBO AFTER 48 WEEKS OF TREATMENT


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12th Annual Friedreich's Ataxia Symposium at CHOP

Join Us!
12th Annual Friedreich's Ataxia Symposium
Monday, Oct. 14, 2019


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Kyle Bryant Living Life Beyond Circumstances

Kyle Bryant was crowned king of his high school prom. Growing up in Sacramento, California, he spent his childhood going to school, snowboarding, playing baseball, and riding his bike around the neighborhood with his buddies. A smart, athletic, popular boy, Bryant’s future was bright. He knew early on that he was destined to do something great with his life.

Bryant was always a bit clumsy, but knee scrapes and elbow cuts are normal for an active kid. When his parents realized that his balance and coordination issues were getting worse as he grew, they started searching for answers. They travelled to different doctors and clinics for a year to find out what was going on with their son.

Read the entire article HERE

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