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.
DIA/FDA Orphan Drug Designation Workshop Nov 4-5, 2010
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4th International Friedreich’s Ataxia Scientific Conference
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Fitchburg man says disease won't sidetrack active lifestyle
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FITCHBURG -- When at 10 years old Nick Carbone was diagnosed with Friedreich's ataxia, a progressive neuromuscular disease, his mother said he refused to accept its devastating prognosis.
Thirteen years later, Anita Carbone said her son still hasn't "accepted that he has a disease," but has made huge strides toward making the best of his situation.
"Nick has been an Eagle Scout, a lifeguard. ... He just has this inner strength and spirit, and he doesn't seem to know the word 'no,'" she said.
Earlier this month, the 23-year-old Fitchburg State College graduate's drive to overcome his obstacles gained national recognition. He was chosen as one of two recipients of grants from the Friedreich's Ataxia Research Alliance (FARA) for the 2010 Ataxian Athlete Initiative. Carbone's grant will help him pay for a new Top End Force Handcycle.
Read More: Fitchburg man says disease won't sidetrack active lifestyle
Symposium participants optimistic about finding first treatment for Friedreich's ataxia
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With all the significant scientific advancements presented, at the end of the symposium it was the people with Friedreich’s ataxia who gave the research meaning and value.
They were people like Holly LeBlanc, who for eight months traveled back and forth from Holland, MI, to USF to participate in a pilot clinical trial testing effects of the drug varenicline on neurological symptoms of Friedreich’s ataxia. She was back again August 26, with her mother and service dog Delsie, to attend the second annual scientific symposium hosted by the Friedreich’s Ataxia Research Alliance (FARA) and the USF Ataxia Research Center. Building on last year’s momentum, the “Cultivating a Cure” symposium drew scientists, clinicians and patients from across the country.
Read More: Symposium participants optimistic about finding first treatment for Friedreich's ataxia
The FARA Energy Ball on Channel 8 in Tampa
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The second annual FARA Energy Ball took place on August 28 2010. The ball was sold out with 850 guests and featured a giant silent auction, a live auction and the music of Sister Hazel as the live entertainment.
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- Interview with Studio 10 - Kyle Bryant and Ron Bartek discuss the FARA Energy Ball
- The Friedreich's Ataxia Research Alliance Announces the 2010 Ataxian Athlete Initiative Grant Recipients
- Advances in Ataxia Research Focus of USF-FARA Symposium
- Repligen Receives Additional Research Grants to Support Development of HDAC Inhibitors for Friedreich’s Ataxia and Huntington’s Disease
- Local hikers take to High Peak for FA