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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.

 

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

Friedreich's Ataxia Research Alliance (FARA) Awards Edison Pharmaceuticals $3 Million Development Grant

Washington, D.C. — The Friedreich's Ataxia Research Alliance (FARA) has awarded a $3 million grant to Edison Pharmaceuticals to advance the development of EPI-A0001 for the treatment of Friedreich's ataxia. While continuing to support Friedreich's ataxia research intended to discover potential therapeutic approaches, FARA, with this new grant, demonstrates its additional focus on translating such discoveries into therapeutic initiatives — moving from drug discovery to drug development. FARA's board sees this new step as part of developing a balanced portfolio of both research and development initiatives, and will seek to fund other promising therapeutic programs through a variety of mechanisms.

"The Edison program is compelling in terms of the quality of science, the experience of the team and the promise it shows for treatment in the near term," stated Mr. Ronald Bartek, President of FARA. "FARA's mission is to slow, stop and reverse the damage done by Friedreich's ataxia. This first FARA grant in drug development reflects the fact that we believe scientific research is on the threshold of treatments that will stop this disease in its tracks — even beginning the process of reversal. FARA is proud to have played a role in Edison's kickoff and we are eager to help move its program promptly through the required preclinical stages."

Read more: Friedreich's Ataxia Research Alliance (FARA) Awards Edison Pharmaceuticals $3 Million Development...

Friedreich's Ataxia Research Alliance (FARA) Joins with MDA and Seek A Miracle in Fighting Friedreich’s Ataxia

Washington, D.C. — The Friedreich's Ataxia Research Alliance (FARA) has awarded a $300,000 grant to Edison Pharmaceuticals in the first step of an ongoing collaboration with the Muscular Dystrophy Association (MDA), and Seek A Miracle (SAM), intended to move promising compounds for the treatment of neuromuscular diseases from the lab to the clinic.

The initial FARA grant is to fund the pre-clinical toxicology and pharmacology on clinical candidates developed by Guy Miller, MD, PhD and the team of Edison Pharmaceuticals of San Jose, California.

"FARA is very excited to work with MDA and SAM on this project," said Ron Bartek, FARA’s president. "We believe these compounds show real promise in addressing the respiratory chain defect present in Friedreich’s ataxia patients. Our hope is that clinical candidates such as Edison’s EPI-A0001 will form the basis of a first-line treatment in arresting the progression of FA."

Read more: Friedreich's Ataxia Research Alliance (FARA) Joins with MDA and Seek A Miracle in Fighting...
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