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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.

Friedrich's Ataxia Patient Raising Funds for Research

Friedrich's ataxia--or FA for short--is a disease that affects one in 50,000 people. It attacks the central nervous system. There's no treatment, and no cure.

But one Savannah woman is hoping to change that. Lindsay Ashman, 26, isn't giving up without a fight. Even though her body is failing her, she's racing against the clock to find a cure.

Being in a wheelchair doesn't slow Ashman down. In fact, it helps her go faster as she tries to keep up with her 4-year-old son, Clay.

Her biggest challenge is maneuvering her power wheelchair, but even that doesn't stop her from doing everyday tasks like picking up after her son. "It's become so normal, I don't even notice it anymore," she said.

Ashman is slowly losing all control of her muscles due to FA. She was diagnosed 2 1/2 years ago and the disease has slowly worsened. Her speech is slightly slurred, and she's lost most of her ability to move.

Read More: Friedrich's Ataxia Patient Raising Funds for Research

Friedreich's Ataxia Research Alliance Announces Support from NIH RAID Pilot Program

Washington, D.C. — The Friedreich's Ataxia Research Alliance announced today that the National Institutes of Health has accepted the University of Pennsylvania and Edison Pharmaceuticals into the Rapid Access to Interventional Development (RAID) Pilot Program for the development of Edison Pharmaceuticals EPI-A0001 for Friedreich's ataxia.

Under the NIH Roadmap initiative, the RAID Pilot Program has assembled an inter-institute team consisting of the National Institute of Neurological Disorders and Stroke, the National Institute of Child Health and Human Development and the Developmental Therapeutics Program of the National Cancer Institute that will combine resources and expertise to translate EPI-A0001 into the clinic. This NIH RAID project will provide drug development guidance and resources to enable an Investigative New Drug application to be filed with the Food and Drug Administration- the first step in its regulatory submission process. The Orphan Products Division of the Food and Drug Administration recently awarded EPI-A0001, Orphan Designation status for inherited respiratory chain diseases of the mitochondria.

MDA and FARA to Accelerate Friedreich's Ataxia Research

Tucson, Arizona — The Muscular Dystrophy Association (MDA) and the Friedreich's Ataxia Research Alliance (FARA) announced today that they will accelerate their joint efforts to combat Friedreich's ataxia, a devastating neuromuscular disorder affecting both children and adults.

Leaders of the organizations met at the MDA national headquarters in Tucson to agree on the most expeditious means for enhancing and advancing their partnership. The discussion centered on a number of leading therapeutic approaches that are expected to be in clinical trials within the next year and that hold great promise for the development of a therapy for Friedreich's ataxia. The two organizations agreed that these clinical projects show a real prospect for effective treatment and that, with a fully enhanced partnership, the MDA and FARA will achieve that goal much sooner.

EDS and RIT Partner to Develop Solution for Friedreich's Ataxia Research

When the Friedreich's Ataxia Research Alliance (FARA) recognized the value of having a patient registry process and data repository to collect patient information globally, they called their friends at EDS for a technical solution. FARA knew that having this information at its fingertips would give them the ability to identify candidates for clinical studies within a short timeframe as well as enable outreach activities through education materials and newsletters.

After gathering FARA's high level requirements, a team of EDS volunteers from Rochester, N.Y., turned to their local education partner - Rochester Institute of Technology (RIT) - to see if the project would be a fit for RIT's B. Thomas Golisano College of Computing and Information Sciences' Software Engineering Department's senior capstone project.

RIT's undergraduate software engineering curriculum calls for students to work as a team, much like they would in a real job environment. The senior capstone project is completed over a 20-week period. The educational value is further enhanced with the curriculum requirement that students complete the project for a real client.

Time for giving

In early May, the Van Schoik family hosted a party at their Bogart home where more than 100 people attended, two bands performed, the weather was perfect and visitors danced until the late hours.

"We had a blast," Nelda Van Schoik said. "It was a lot of fun."

However, the fun was underscored by the serious reason the party was held. Two of Nelda and Robert Van Schoik's three daughters - 26-year-old Robbi and 23-year-old Becca - suffer from Friedreich's Ataxia, and the gathering, which included a silent auction, was held to raise money and awareness for the disease.

According to the Friedreich's Ataxia Research Alliance, the disease is an inherited one that causes progressive damage to the nervous system, resulting in symptoms ranging from weakness and speech problems to heart disease. There is no cure for Friedreich's Ataxia, although researchers have been able to establish treatments to deal with some of the symptoms and complications from the disorder.

In the past three years, the Van Schoiks have been able to raise about $35,000 for the Virginia-based FARA, an organization founded in part by parents whose children suffer from the disease.

Read More: Time for giving

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