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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.


Stars glow in Branford for Friedreich's event

BRANFORD -- It wasn't quite the Tribeca Film Festival, Tony Awards or the Oscars, but a group of stars converged quietly at the Owenego Inn recently to receive a lesser-known, but personally important honor: the first Friends and Allies Award from the Friedreich's Ataxia Research Alliance.

The connection that brought acclaimed actress Mary Stuart Masterson, her husband, actor Jeremy Davidson (who appears in the TV series "Army Wives") and screenwriter and actor Jayce Bartok to Branford is two sisters who are Southern Connecticut State University students and have Friedreich's ataxia, a progressive neuromuscular disease.

The sisters, Sam Bode, 22, and Alex Bode, 19, formed a close friendship with the stars after they met with Masterson to tell her what it is like to live with the rare disorder. Masterson wanted the everyday information for what would become the critically acclaimed, award-winning independent film "The Cake Eaters," in which Masterson makes her cinematic directorial debut.

Read More: Stars glow in Branford for Friedreich's event

FARA’s First Friends & Allies Award Presented to th e Executive & Creative Team of The Cake Eaters

The Friedreich’s Ataxia Researc h Alliance (FARA) presented their first Friends & Allies Award to the executive and c reative team of the award winning film, The Cake Eaters on September 11, 2009 in Branford, CT. Mary Stuart Masterson, (Director/ Producer), Jayce Bartok (Screenplay writ er), Jesse Scolaro (Producer), and Carol & Patrick Morris (Executive Producers) accept ed the award on behalf of The Cake Eaters team at the Bode/ Caruso Family’s Find A Cure Dinner/ Auction fundraiser event.

The values of FARA’s Friends and Allies award are rooted in what it means to be a good friend to our fellow person- treating one another with respect, dignity, and kindness. The Cake Eaters team modeled that kind of friendship to the Friedreich’s ataxia community and FARA’s mission by attending fundraising events, lending their names to the cause and personally making in kind and monetary contributions to the organization.

The team has also notably demonstrated their friend ship with their film The Cake Eaters, released earlier this year, which featured a main character with Friedreich’s ataxia- Georgia played by Kristen Stewart. The story was t old with a sensitivity that made people pay attention to a character with a rare neuromuscular disorder and care about her struggle. In this film, art served as a powerful medium for storytelling and raising awareness- a unique awareness of Friedreich’s ataxi a that FARA could not have generated on its own.

Read More: FARA’s First Friends & Allies Award Presented to th e Executive & Creative Team of The Cake Eaters

Repligen Announces Identification of Drug Target for Friedreich’s Ataxia

WALTHAM, MA – Repligen Corporation (NASDAQ: RGEN) reported today publication of research that identifies histone deacetylase 3 (HDAC 3) as an important enzyme target for therapeutic intervention in Friedreich’s ataxia.  These research findings confirm the drug target of the HDAC inhibitors that Repligen is currently developing for the treatment of inherited neurodegenerative diseases such as Friedreich's ataxia.  The study entitled “Chemical Probes Identify a Role for Histone Deacetylase 3 in Friedreich’s Ataxia Gene Silencing” published today in the journal Chemistry & Biology (volume 16, 980–989, September 25, 2009) was conducted in collaboration with scientists at The Scripps Research Institute.   
 
“Prior research indicated that HDAC enzymes play an important role in silencing the gene implicated in Friedreich’s ataxia,” stated Walther C. Herlihy, President and Chief Executive Officer of Repligen Corporation.  “Identification of the involvement of HDAC 3 is an important step in developing a specific drug for Friedreich’s ataxia without the potential toxicities associated with broad-acting HDAC inhibitors.  There are more than 15,000 patients worldwide with Friedreich's ataxia with no therapies available for treatment.”

Read More: Repligen Announces Identification of Drug Target for Friedreich’s Ataxia

Outback Steakhouse and Local Non-Profit Ride for a Cure, support clinic at Children's Hospital of Philadelphia

Philadelphia, PA. — Friedreich’ s Ataxia Research Alliance (FARA) and Outback Steakhouse restaurants of PA are proud to a nnounce registration for Ride Ataxia- Philadelphia, a one-day cycling event scheduled for Sunday October, 25th, 2009.

The cycling event and Family Fall Festival begins a nd ends at Limerick County Park in Royersford, PA. 10-, 25- and 50-mile routes will co ver scenic country roads and will be supported with stocked rest stops, sag vehicles and roving support. Riders can register and fundraise on line either as individuals or in t eams at www.rideataxia.org/Philly . Registration includes the best event food around pr ovided by the Outback Steakhouse, Carrabba’s Italian Grill and Bonefish Grill. Fall f estival activities include a ¾ mile paved loop for a kids ride as well as face painting and F all themed games and crafts. Ride Ataxia-Philadelphia continues a tradition of pe rsonal triumph and physical achievement begun by Kyle Bryant, a Friedreich’s At axia patient, who refused to give up cycling as the devastating effects of the disease b egan to severely affect his balance. Since then, Kyle Bryant and the Ride Ataxia cycling team have traveled 3,300 miles in the past three years, raising invaluable ataxia awarenes s and over $700,000 in research funds.

Read More: Outback Steakhouse and Local Non-Profit Ride for a Cure, support clinic at Children's Hospital of Philadelphia

Mayor of the City of Tampa Proclaims September 25 - Ataxia Awareness Day

Ataxia advocacy groups and communities around the world are preparing for the upcoming International Ataxia Awareness Day on September 25 with events to increase public awareness about ataxia and raise funds to support research into treatments for the disease. City of Tampa Mayor, Pam Iorio, recognized this important day by issuing a proclamation to declare Ataxia Awareness Day in the City of Tampa, Florida and encouraging Tampa citizens to support people with ataxia.

Read More: Mayor of the City of Tampa Proclaims September 25 - Ataxia Awareness Day

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