Students wheel themselves to class in the North Branford High School hallway during the Open Your Heart fundraiser. Approx. 30 N.B.H.S. students and staff chose to be in a wheelchair during the school day on Friday. The purpose of the event is to heighten the school community's awareness of the challenges people with physical handicaps must endure throughout their daily lives.
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.
Teens experience life in wheelchairs
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PhRMA Honors Patient Advocates Ron and Raychel Bartek
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WASHINGTON, March 18 /PRNewswire-USNewswire/ -- Pharmaceutical Research and Manufacturers of America (PhRMA) President and CEO Billy Tauzin today honored Ron and Raychel Bartek for their dedicated work driving awareness of Friedreich's ataxia, a debilitating, life-threatening, rare disease.
The Barteks are co-founders of the Friedreich's Ataxia Research Alliance, an organization dedicated to the pursuit of scientific research leading to treatments and a cure for the disease. However, they are more than advocates; they are also parents of Keith Bartek, who succumbed to Friedreich's ataxia recently at the age of 24.
Although there remains no approved medication to treat the disease, clinical studies are currently being conducted. However, such near-term hope was not always the case, as Raychel Bartek said: "When Keith was diagnosed, I asked the doctor what medicine she would prescribe for him. Her eyes were watering when she said, 'There's nothing he can take.'"
Regarding the lack of treatment options, Ron Bartek added, "The prognosis was awful for Keith."
Read More: PhRMA Honors Patient Advocates Ron and Raychel Bartek
Demystifying Medicine
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Featuring Drs. Tracy Rouault and Kenneth Fischbeck along with Tom Trovinger, FA Patient and Jen Farmer, FARA Executive Director.
FARA Congratulates Melissa Phares, ChairScholar Award Winner
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