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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.

 

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.

Read more: MDA and FARA to Accelerate Friedreich's Ataxia Research

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.

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

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

Promising Clinical Trials Fuel Preparations for "Friedreich's Ataxia Awareness Day" — May 20, 2006

Washington, D.C. — Friedreich's ataxia patients and families have more reason than ever to welcome the approach of "Friedreich's Ataxia Awareness Day" on May 20th. The third Saturday of May is recognized in Congressional and state proclamations and through various events around the country as "Friedreich's Ataxia Awareness Day." Friedreich's ataxia is a fatal, hereditary, degenerative, neurological disease that typically first becomes noticeable when children are in elementary school.

An extraordinary explosion of research insights has followed the identification of the Friedreich's ataxia gene in 1996. Now, only ten years later, there is increasing conviction that treatments will soon be developed for Friedreich's ataxia and that the resulting insights will be broadly applicable across a wide range of neurological disorders such as Parkinson's, Huntington's, Alzheimer's, ALS and a number of rarer diseases as well.

Read more: Promising Clinical Trials Fuel Preparations for "Friedreich's Ataxia Awareness Day" — May 20, 2006

Fundraisers party to help Friedreich's Ataxia group

The Van Schoick family is hosting a party from 8 to 11:30 p.m., Saturday to raise funds for the research of Friedreich's Ataxia. The party is at 1001 Hammond Creek Trail, Bogart.

Live music will be provided, along with raffles, dancing, door prizes, food, beer and wine. Casual dress is recommended.

Friedreich's Ataxia is an inherited disease that causes progressive damage to the nervous system resulting in symptoms ranging from muscle weakness and speech problems to heart disease. "Ataxia," which refers to coordination problems, occurs in many different diseases. In Friedreich's Ataxia, ataxia results from the degeneration of nerve tissue in the spinal cord and of nerves that control muscle movement in the arms and legs.

Read More: Fundraisers party to help Friedreich's Ataxia group

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