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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.


9th annual FA Symposium - Oct 17th, 2016

The Friedreich’s Ataxia Center of Excellence at The Children’s Hospital of Philadelphia is pleased to present this one-day symposium providing patients and families with up-to-date clinical information on therapeutic approaches and current research being conducted in the field of Friedreich’s ataxia.

The symposium will be held Monday, Oct. 17, 2016, at the Crowne Plaza Valley Forge in King of Prussia, Pa. The hotel is directly across from the King of Prussia Mall, the largest shopping mall in the United States, and is less than two miles from the Valley Forge National Historic Park, the site of Washington’s troops’ winter encampment during the Revolutionary War.

Click HERE for more information

These families who share a rare disease just gathered for an international reunion. It may speed along a cure.

LAPORTE, INDIANA — The first time Jake Tompkins knew something was wrong was when he fell off a stage. He was a touring musician, playing bass guitar. During a club show in Oakland, he couldn’t understand why he couldn’t keep his balance, or why his brain would tell him to play one note and his fingers would play another.

Then he hit the floor. “People thought I was drunk or on drugs,” he said. It was neither. Tompkins had Friedreich’s ataxia (FA), a rare degenerative neuromuscular disorder that affects about one in 50,000 people in the U.S.

Read the full article HERE.

The Caregiver’s Challenge: Making Clinical Decisions for Your Child

Deciding to participate in a clinical trial can be a difficult decision. Deciding on behalf of a child is often even more difficult.

"You’re always asking yourself, ‘Are we covering all the bases? Have we looked everywhere?’ You are so responsible because it is someone else. You’re very conscious of the fact that this is on behalf of your child."

Thank you C.I.S.C.R.P for sharing this very insightful article highlighting the importance and weight of making informed decisions about clinical trials on your child's behalf.

Read the full article HERE

Save The Date - 9th annual FA Symposium - Oct 17th, 2016

The Symposium will be held on Monday, Oct 17th, at the Crowne Plaza Valley Forge, located in King of Prussia, PA. Join us for an informal meet-and-greet on Sunday, Oct 16th, 2016.
Click HERE for more information

High School students raise money for Friedreich's Ataxia

Watch video and read the article

Sioux Falls - A group of high school students in Sioux Falls is trying to raise awareness about Friedreich's Ataxia through a musical theater show at the Orpheum Theater in Downtown Sioux Falls. Ten students have been working on the project, which they call "FA for FA," short for Fine Arts for Friedreich's Ataxia. It is a student led, student run, and community supported organization geared at raising awareness and money for Friedreich's Ataxia.

The idea for the project started with a fellow musical performer in Sioux Falls, Raena Brendtro, who was diagnosed with FA in 2013. FA is a debilitating, life-shortening, neuromuscular disorder that affects about 15,000 people worldwide.

Read the full article HERE

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