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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.

 

10th Annual Friedreich’s Ataxia Symposium at CHOP

CHOP FA Sympoium 2017

For more information about the Symposium, please Click Here.

For registration information, please Click Here.

Fitchburg lawyer battling rare disease: ‘I want to walk’

Nick Carbone
It is a rare, inherited, progressive disease affecting one in 50,000 that results in loss of ambulation six to eight years after diagnosis and risk of premature death, with an average lifespan for those who have it of 35 years old.

Local attorney and politician Nicholas J. Carbone was diagnosed with Friedreich’s ataxia at 12 — when he was still able to walk. He is now 30.

Mr. Carbone is one of 10 people living with Friedreich’s ataxia chosen from across the country, and the only one from Massachusetts, to testify at a recent meeting of the U.S. Food and Drug Administration in Washington, D.C., attended by more than 25 FDA officials, more than 25 medical researchers and those from pharma, and 140 patients and family members.

Read more HERE

Student battling rare disorder — with a smile — wins national writing contest

Claire Juip
A Grosse Pointe fourth-grader's experience with a rare disease inspired her to write a letter that won first place in a national writing contest.

And Claire Juip, 9, is herself an inspiration — to her family, to her friends and to the community around her school, St. Paul Catholic School in Grosse Pointe Farms.

She and her brother, 11-year-old Jake, have Friedreich's ataxia. The genetic condition causes progressive damage to the parts of the nervous system involved in muscle control.

Despite the prospect of likely having to use a wheelchair someday, both children are filled with optimism, working to educate people about the condition and participating in sometimes painful medical studies in the hope of helping others.

Read more HERE

Four National Organizations, Hundreds of Families Impacted, Join Together to Speak with FDA about Drug Development in Friedreich’s Ataxia

HYATTSVILLE, Md. June 1, 2017 — The Friedreich’s Ataxia Research Alliance (FARA), National Ataxia Foundation (NAF), Muscular Dystrophy Association (MDA) and Cure FA Foundation will host the first ever Friedreich’s Ataxia (FA) Patient-Focused Drug Development (PFDD) meeting on Friday, June 2, to give patients, families and caregivers the opportunity to speak directly to the U.S. Food and Drug Administration (FDA) about the impact FA has on their daily lives, and their highly unmet need for effective treatments.


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FARA to Ring The Nasdaq Stock Market Closing Bell - Friday, May 19th

Nasdaq FARA

The Friedreich’s Ataxia Research Alliance (FARA), a non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich's ataxia will visit the Nasdaq MarketSite in Times Square for Friedreich’s Ataxia Awareness Day.

In honor of the occasion, Ron Bartek, President and Co-Founder and Paul Avery, Chairman of the Board, will ring the Closing Bell.

Read more HERE

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News & Press Archives