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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.

 

Actress Mary Stuart Masterson to Host Local Friedreich’s Ataxia Fundraiser

Sam, Mary Stuart Masterson, and Alexandria

Branford, CT — Actress Mary Stuart Masterson will host a fundraiser at 6 PM on Friday, September 22, 2006 at the Owenego Inn in Branford, to help find a cure for Friedreich’s ataxia, a devastating neurological disease. Outback Steakhouse will prepare and donate all food for the event. Local "celebrity" waiters will serve the 300 guests.

Masterson, who has starred in such movies as "Fried Green Tomatoes," "Bed of Roses," "Benny & Joon," and "Some Kind of Wonderful," was invited to host the event by Mary Caruso, whose daughters Sam and Alex have Friedreich’s ataxia. For the past several years, Caruso and her committee have worked hard to put on their annual dinner / auction / dance with the help of the Owenego Inn.

Each year Caruso and her team raise money for the Friedreich’s Ataxia Research Alliance (FARA), a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich's ataxia. Caruso is a board member of FARA which was established in 1998 by parents and scientists.

In February, Caruso received a call from Masterson who was preparing her directorial debut in a movie that includes a child with Friedreich’s ataxia. "When I found out it was Mary Stuart Masterson I had been communicating with I almost fell through the floor," said Caruso.

Read more: Actress Mary Stuart Masterson to Host Local Friedreich’s Ataxia Fundraiser

Scripps Research Team Reverses Friedreich's Ataxia Defect in Cell Culture

Newly Developed Compounds Activate Silenced Gene Responsible for Debilitating Disease

La Jolla, CA — A team from The Scripps Research Institute and the University of California School of Medicine has developed compounds that reactivate the gene responsible for the neurodegenerative disease Friedreich's ataxia, offering hope for an effective treatment for this devastating and often deadly condition.

The results of the research are being published on August 20 in an advanced, online version of the journal Nature Chemical Biology.

In the new study, the researchers tested a variety of compounds that inhibited a class of enzymes known as histone deacetylases in a cell line derived from blood cells from a Fredreich’s ataxia sufferer. One of these inhibitors had the effect of reactivating the frataxin gene, which is silenced in those with the disease. The researchers then went on to improve on this molecule by synthesis of novel derivatives, identifying compounds that would reactivate the frataxin gene in blood cells taken from 13 Friedreich’s ataxia patients.

Read more: Scripps Research Team Reverses Friedreich's Ataxia Defect in Cell Culture

Raytheon Support Group Helps Match Service Dog Shadow with 9-Year-Old Donovan

As many WebRing readers know, WebRing has been following the story of Raytheon Persons with DisAbilities (RPDA) member and Raytheon Parents of Dependents with Special Needs (RPODS) chairwoman Mary-Lisa Orth. Orth’s twin sons, Benjamin and Alexander, were diagnosed with Friedreich’s Ataxia disease in 1999 (see WebRing Volume 2, Issue 3, page 3). In 2004, Benjamin died from complications of scoliosis surgery. After Benjamin’s tragic death, his brother Alexander no longer had an interest in completing the training for Benjamin’s service dog Shadow. Last April, Orth took Shadow to a family in Yonkers, New York, that she met in Boston at the annual National Friedreich’s Ataxia Conference in March. Orth had corresponded with the family for two years through the Friedreich’s Ataxia parents’ group list serve. The family includes a 9-year-old boy, Donovan, who also has Friedreich’s Ataxia.

Read More: Raytheon Support Group Helps Match Service Dog Shadow with 9-Year-Old Donovan

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.

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