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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.

International Friedreich's Ataxia Conference at NIH Highlights Promising Research, Clinical Trials and the Importance of Public-Private Partnership

The Friedreich's Ataxia Research Alliance (FARA) and the National Institutes of Health (NIH) have just hosted the Third International Friedreich's Ataxia (FRDA) Scientific Conference at the NIH in Bethesda, Maryland, highlighting and advancing the exciting research leading now to a variety of clinical trials that show promise of developing treatments for this devastating disorder.

National Institute of Neurological Disorders and Stroke (NINDS) Director Story Landis, in her remarks opening the conference, said there is a "palpable sense of energy, excitement, and enthusiasm" over the scientific progress made since the FRDA gene was discovered 10 years ago. Nearly 150 leading Friedreich's ataxia scientists from around the world discussed their new insights and findings during four days of meetings at the NIH, November 9-12. The public-private partnership underlying this progress and highlighted by the conference involved the NIH, patient advocacy foundations, pharmaceutical and biotechnology industry representatives, and the scientists from academic institutions.

The government sponsors of the conference were the NIH Office of Rare Diseases (NIH/ORD) and NINDS. NIH/ORD was represented at the conference by Dr. Giovanna Spinella. NINDS was represented by its Director and a number of NINDS scientists long involved in advancing the therapeutic approaches examined during this meeting.

Frank Wootten to Cycle Coast-to-Coast to Raise Awareness and Research Money for His Son's Friedreich's Ataxia

Frank Wootten of Hooksett, NH will ride his bicycle from St. Augustine, FL to the Scripps Research Institute in La Jolla, CA next month to raise awareness and research funds to help find a cure for his son’s Friedreich's Ataxia, a devastating neurodegenerative disease. Mr. Wootten's son, Thomas, 28, is confined to a wheelchair. Thomas, nicknamed 'TK' like his grandfather and great-grandfather before him, lives with Friedreich's and his service dog James Bond in Columbia, SC.

"I am hoping that through my cycling I can help my son and many others who suffer from this horrible disorder," said Mr. Wootten.

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.

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.

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

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