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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.

FARA Job Posting: Patient Engagement Director

Click to view PDF
FARA is seeking a full time Patient Engagement Director.

Please click HERE for more information.

New York Times Review: A Race to Raise Awareness in ‘The Ataxian’

A couple of years back, the ice bucket challenge was a social-media sensation, raising an estimated $115 million for research into amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

Not all such ailments receive that kind of visibility — or promotion. Friedreich’s ataxia, a little-known, progressive, fatal neuromuscular disease, has no cure; most heartless of all, its onset usually occurs in young children, who are unlikely to reach the age of 30.

Read the full article HERE

FARA Joins Nasdaq’s Live Broadcast on #GivingTuesday

FARA, Adverum Biotechnologies, Catabasis Pharmaceuticals and Horizon Pharma plc
Join Nasdaq’s Live Broadcast on #GivingTuesday

New York- November 29- The Friedreich’s Ataxia Research Alliance (FARA), Adverum Biotechnologies, Catabasis Pharmaceuticals (Nasdaq:CATB), and Horizon Pharma plc mark #GivingTuesday on November 29 by teaming up for a live informational Facebook broadcast from Nasdaq MarketSite Entering its fifth year, #GivingTuesday is a global day of giving fueled by the power of social media and collaboration.

FARA’s Executive Director, Jennifer Farmer, will moderate a panel, including select Nasdaq-listed companies with product candidates focused on Friedreich’s ataxia, to raise awareness of this rare disease and the ongoing work to develop treatments. The panel will discuss different approaches to treatment development for FA including small molecules, biologics and gene therapy, and how these can be synergistic. They will also highlight ways in which advocacy organizations and pharmaceutical organizations have partnered to expedite research.  The panel will include:

  • Amber Salzman, PhD- President & CEO at Adverum Biotechnologies, Inc. 
  • Andrew Nichols, PhD- Chief Scientific Officer at Catabasis
  • Jeffrey Sherman, M.D., FACP-Executive Vice President, Research and Development and Chief Medical Officer at Horizon Pharma plc. 

Read the full press release HERE.

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.

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