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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.


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

JOIN AN UPCOMING LIVE WEBINAR TO LEARN ABOUT THE PATIENT FOCUSED DRUG DEVELOPMENT MEETING

JOIN AN UPCOMING LIVE WEBINAR on April 4th or April 11th
TO LEARN ABOUT HOW THE FA COMMUNITY CAN PARTICIPATE IN THE
PATIENT FOCUSED DRUG DEVELOPMENT MEETING
WITH THE FOOD AND DRUG ADMINISTRATION

The Friedreich’s Ataxia Research Alliance (FARA), in partnership with the Muscular Dystrophy Association and the National Ataxia Foundation, will be hosting two live webinars in April to discuss how FA patients and caregivers can participate in the very important, upcoming Patient Focused Drug Development meeting with the U.S. Food and Drug Administration (FDA) in June.

Please join us for one of the two live webinars (click "Read More" below) to view key information, including background information about the FDA & drug development, an overview of FDA Patient-Focused Drug Development, discussion questions & format, tips for participating in the meeting, and meeting logistics.
 

Rare Disease Week on Capital Hill, February 27 - March 2, 2017

Rare Disease Week
Ron Bartek and Brigid Brennan joined rare disease advocates from 48 states for the annual Rare Disease Week in Washington DC. The theme this year was research - a mission FARA has been supporting for almost 20 years. Here are some highlights:

Monday - Rare Disease Day at the National Institute of Health (NIH)

It was standing room only as doctors and advocates shared updates from their respective fields. Over 700 people were present and, for the first time, many more livestreamed from home. Everyone was in agreement that research is needed in the rare disease community with less than 500 treatments for over 7000 diseases. However, we are not alone in benefitting from goal. Rare disease are often the "window" into common disease treatments as well. Rep Leonard Lance (R-NJ) spoke about his continuing support for the rare disease community. The crowded erupted in applause to learn that Dr Francis Collins, a champion for our community, was asked to stay on as head of the NIH.


That evening Rare Disease Legislative Advocates (RDLA) hosted a cocktail reception and documentary screening of Up for Air. Senator Ed Markey (D-MA) and Representatives Jim McGovern (D-MA) made brief remarks of support. Our own Ron Bartek moderated the panel discussion of the movie where everyone left in awe by Jerry Cahill's inspirational journey with Cystic Fibrosis.
 

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