We are honored to interview Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Alliance (FARA). Since both of us have Friedreich’s ataxia (FA), this organization and Ron himself are special to us.
Note: This episode has some audio imperfections. We still chose to release it, going against the advice of our audio producer. (You’re awesome, Jake.) So we give you the first half of our interview with Ron Bartek. The audio problems are slight, and sound like Kyle banging together two halves of a coconut every now and then. Picture that and we hope that you are able to enjoy this interview as much as we did. Part 2 of this interview comes out in March.
In a word, Ron is a peacemaker. Kyle starts off by reading Ron’s long and impressive bio. Of special note to Ron is that he was able to be a part of the negotiation team for the Intermediate-Range Nuclear Forces (INF) Treaty between The United States and The Soviet Union. As a school kid, Ron dreamed of being able to know enough about global superpowers that he would be able to help orchestrate peace between the US and the Soviet Union. After an impressive military career, he was a part of the INF Treaty, which helped put an end to the Cold War.
Shortly after that treaty was signed, Ron’s son Keith was diagnosed with the rare disorder Friedreich’s ataxia (FA). Suddenly the world of the rare disease community opened up to him, and he decided to use his ample peacemaking skills in the fight against FA.
In discussing the benefits of Rare Disease Day, Ron seemed almost giddy when he described it as the rare disease community being able to voice their opinions to those in charge of the fields of medical research, such as the NIH or the FDA, “increasing the volume and frequency of the patient voice”.
Reaching out to the top medical institutes cannot be stressed enough, says Ron. On June 2, FARA (in partnership with MDA and NAF) is planning a Patient Focused Drug Development Meeting with the FDA. The purpose of this meeting is to remind the FDA of the human quality of a rare disease that they may not hear much about, FA. Patients will be able to participate in person or live, online – FARA will publish details on how to get involved.
Even though some people may see the FDA as a barrier to finding effective treatments or cures for rare disease, Ron is passionately against that idea. He sees FARA’s relationship with the FDA as one of our greatest assets. The goal of FARA and the goal of the FDA is the same – to find a safe and effective treatment and cure for FA. Rather than see the FDA as a barrier, Ron encourages us to see them as trusted teammates.
Whether dealing with The Soviet Union or the FDA, Ron shows the power of peacemaking. We are lucky to have him as a leader for us in the FA community.
REMEMBER THAT RARE DISEASE DAY IS FEBRUARY 28. MAKE YOUR VOICE HEARD!
“See you again, and see you at the finish-line.” -Ron Bartek