Member of the team

Getting involved in research is about so much more than helping yourself

by Jim Albert, Eldersburg, Maryland

Patients who are new to research may be trying to decide if clinical studies are something in which they want to participate. They might wonder, Am I a good fit? Will this study benefit me? I hope this story might be helpful to someone trying to decide whether to get involved.

My involvement with FSHD clinical studies started in 2016. The first FSHD drug trial in close to a decade was about to begin. A few months before, at age 50, I developed weakness in my legs (tibialis anterior) for the first time. I was diagnosed 25 years earlier, and the impact of FSHD was mostly to my upper back muscles. I could still participate in many of the physical activities that I had enjoyed for much of my life.

For 25 years FSHD wasn’t a daily roadblock. Now it was. I didn’t do well mentally with weakened legs. When I saw that an FSHD drug trial was about to start, I thought, “Perhaps this drug will give me back what I want. Maybe I can hike long distances again. Maybe I can play tennis again. If I’m really lucky, just maybe I’ll be able to put my arms over my head again.” Obviously completely selfish reasons.

A change of heart

I didn’t know much about drug trials, nor that very few drugs complete the clinical trial process all the way to an FDA approval. The trial result disappointed me. I received no physical benefit. However, during the trial at Kennedy Krieger Institute, I had the pleasure of meeting an extremely dedicated research team led by Kathryn Wagner, MD PhD. The entire team – from Dr. Wagner, to the coordinators who keep the many pieces of the studies flowing smoothly, to the nurse who joked with me while he drew my blood and the physical therapists who made the most tedious exercises fun – all truly made me feel like an integral part of the research team.

My frame of mind changed. This was no longer about “what’s in it for me,” but about being part of a team that really wants to solve very hard problems. Our relationship is truly symbiotic. I now look forward to research opportunities, whether they be natural history studies or drug trials. My advice for anyone thinking about getting involved in a study? Think of it as an opportunity to be part of something that is so much bigger than oneself.