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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.

 

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
 

What it’s like to be a teenager whose body is ground zero for a life-saving medical discovery

When I first meet Josh Wooten at a deli in Gainesville, Florida, he flashes a big smile at me, squinching up his eyes. He looks like any other hopeful young man making the transition to college, from his faded graphic t-shirt to his scuffed tennis shoes. But he is seated next to a large, black walker.

“Friedreich’s Ataxia is like being drunk all the time except without the fun,” says Josh, who is 19 years old. “You are tired all the time and constantly feel off balance.”
FA affects roughly one in every 50,000 people in the US. But there are hundreds of millions more around the world with rare degenerative illnesses that affect the nervous system like Parkinson’s, Huntington’s, Lou Gehrig’s disease, and Pompe disease.

Read the full article HERE
 

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