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."