As promised, here is the second half of our interview with Ron Bartek, president and cofounder of the Friedreich’s Ataxia Research Alliance, or FARA. Please note that the audio quality is less than ideal, but still definitely enjoyable.
Along with Ron’s very impressive resume, we found out that he learned to sleep standing up in Army Ranger School. Ron discovered much of what the body could do when deprived of normal physical needs like sleep and food.
Ron shares about the experience of his son Keith’s diagnosis with Friedreich’s ataxia at nine-years-old. A counselor who noticed Keith’s problems with balance and coordination recommended that Keith go to a neurologist for a check-up. At that appointment few months later, Ron and his wife Raychel were told that Keith had Friedreich’s ataxia (FA), a condition they’d never heard of and couldn’t even spell. When they asked what they could do about this diagnosis, the neurologist gave a grim answer – nothing.
To Ron and Raychel that was not an acceptable answer so they began researching FA on their home computer. They learned about all the symptoms of the disorder, and all of their research was very disheartening. However there was one piece of good news – the year prior (this was in 1997), scientists discovered the specific gene that caused FA. Ron and Raychel believed that since the gene was identified, it would be much easier to find a treatment or a cure, but that there was no organization that specifically researched FA. They decided they would change that.
Ron, Raychel, 5 other parents of children with FA, 1 adult patient, and 3 scientists submitted paperwork to the District of Columbia to initiate FARA and become its first board of directors.
One of FARA’s first actions was the submittal of a proposal to the NIH for the first scientific conference on Friedreich’s ataxia. Four months later, the grant was funded by the NIH, and six months later, that conference was held for people allover the world to attend.
Important to note is at that first conference, no drug company wanted to attend (because it’s too rare, they said) and no clinical trials for FA was ever done. Today, multiple drug companies are aligned with FARA. And they are hopeful for a cure.
The source of FARA’s success can be summed up in one word: collaboration. Knowing that FA exists as a rare genetic anomaly is a boring statistic, but meeting FA patients, seeing their strengths and weaknesses, getting to know them – helps to bring out the humanity of those who live with FA.That humanity is central to what FARA is, and who Ron is. Whether he is partnering with a group of scientists and drug companies or following the two stripes on the soldier’s hat in front of him, Ron Bartek recognizes that our strength is found in our ability to collaborate with others.