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Winter 2017

Dr Ben Deverman and group Dr. Ben Deverman

By Matt LaFleur

“Please, just Ben.”

The first thing I asked Dr. Ben Deverman is whether he preferred to be called “Dr. Ben” or “Dr. Deverman.” He seemed relieved as he gave me his answer, and I knew that my job would be easy: I am lucky to introduce him.

One of the most exciting fields of scientific research is gene therapy, a term that leaves most of us suffering with FA feeling awe and wonder. If FA is, by definition, a genetic anomaly, then the science of correcting genes seems extremely promising for FA.

The exciting promise of gene therapy was delivered to us at the FA symposium by Ben Deverman, PhD, Senior Research Scientist, director of the CLOVER (CLARITY, Optogenetics and Vector Engineering Research) Center within the Beckman Institute at Caltech in Pasadena, CA:

"I run this center with Viviana Gradinaru who is an assistant professor and the center’s principle investigator. We are focused on developing cutting edge technologies in the fields of gene therapy and gene transfer for scientific applications, tissue clearing (a way of making tissues transparent so you use microscopes to image complex biological processes in their intact 3D form - without making thin sections on slides) and optogenetics, which uses light-activated channels to manipulate the activity of neurons."

Reports on his findings did not lessen the promise of gene therapy as an exciting field in the search for a treatment of FA, but grounded the dream in a scientific reality, making it less of a fantasy. However, we know that gene therapy will not be a sudden “fix” for FA. “While gene therapy may not offer a cure for FA, if we can solve some of the remaining challenges, I’m hopeful that it will have a big positive impact on patients’ lives,” Ben explains.

The excitement of gene therapy’s potential is, shockingly, not the focus of this article. The greatest strength of FARA as an organization is its way of humanizing people instead of only seeing them as means to an end. Those of us with FA are not patients or subjects, but Ambassadors; the FDA is not an obstacle to overcome in finding treatment, but a cherished group of allies; we are not merely strangers with only a common disorder, but a FAmily. Ben is not just a messenger of incredible scientific advances, but a noble and worthy person. And to miss that and only focus on his research may be typical, but it is ultimately incomplete. To see both the brilliance of his research and the strength of his character gives us a little more compassion, a little more well-roundedness. After all, it’s the FARA way.

Ben likes to get away from the city in his free time, to clear his head. He enjoys taking his road bike out into the mountains near his home in Southern California. When he’s not in the lab, he is often on his bike or hiking a trail, enjoying the scenery and the quiet. He also wishes he had time to do more traveling with his wife of seven years.

Ben says that he has always been interested in biology, so he pursued a career in molecular biology. After obtaining a PhD, he transitioned into the field of neuroscience and later became interested in figuring out how to transfer genes into the brain cells of living organisms using inactivated viruses. This process seemed to be exactly what was needed in the treatment of Friedreich’s ataxia, a disorder he’d heard of but had never encountered. Ben recounts what led him to FARA:

“We had success engineering viruses that could cross the blood brain barrier and deliver genes into the brain and spinal cord (the central nervous system). We then looked for (and found) a virus that would work in a similar way in the peripheral nervous system where the sensory neurons reside. The vector we developed that targeted sensory neurons also serendipitously worked well in heart muscle. Therefore, we thought we had a combination of two vectors that were ideal for delivering FXN. And based on this I wrote a grant to FARA to get funding to start the study.”

After Ben wrote a grant for FARA, he received an email about the rideATAXIA event in SoCal. In a profound way, two of Ben’s passions—his love of cycling and his scientific curiosity of the prospect of gene therapy—came together. Ben was hooked.

He formed a last-minute team of riders from his lab and met Kyle Bryant for the first time at the ride. FA became less of a random disorder and more of one with personal ramifications in Ben’s eyes. He has continued working with FARA, traveling to Australia to give a presentation in Melbourne, going to the rideATAXIA in Philadelphia, and serving as a highlighted speaker at both the FARA Ambassador Training and FA Symposium in Philadelphia.

It’s an amazing feeling, knowing that Ben is on our side. FA research is in the best and brightest hands. I want to thank Ben on behalf of FARA for everything he does. We are grateful and we appreciate you.

According to Ben, “The feeling of being on the cusp of contributing, in my own small way, to the possible treatment of a disease is highly motivating.”

Your way is not small at all, Ben.

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