PatientPerspectiveAlex1I’ll admit, I was a bit nervous starting my first clinical trial. A 5 hour drive and overnight stay gave a clear distinction that I wasn’t in my comfort zone. How difficult would the testing be? How stressful would the next few months be during the trial? When would I be able to leave and get lunch (I was very hungry!)? I settled my nerves (FA medical pun intended) and reminded myself why I was doing this…

I won’t claim to be selfless and heroic, saying I was doing this for the FA community. To be honest, I was hoping to personally benefit from the treatment. I had done extensive research on my own, consulted with my physician, and decided the mechanism of this drug was most promising at my stage of progression. Of course, I want the drug to be successful and move forward to a treatment for everyone. But my main motivation to get involved now was to see if my health might improve (trial is still underway… can’t share any details of how I’m feeling…). 


Morale reasoning aside, there I was at the infamous “CHOP”. Lauren, the study coordinator, got me started right away with some physical tests, bloodwork, and neurological evaluations. Within an hour, I understood why many FA’ers have told me they “feel at home at CHOP” – everyone was extremely friendly, I felt comfortable everywhere we went, the testing was easy to do, and Lauren took all the stress away; explaining every test/examination, keeping us on schedule, guiding me throughout the hospital all day, and even helping to carry my bags! I started to relax just in time for the dreaded exercise stress test… 

Well actually, I was excited for this test. How often do you get to be monitored like a pro athlete while working out? I enjoy exercising and pushing my limits, so the test counted for my work-out that day. If you don’t like exercising or physical activity, you’d be able to complete the test but you might not enjoy it as much – I say this not to discourage anyone from participating in a trial, but to make sure you understand all the expectations before getting involved. For me, the exercise test, followed by a fun and energetic neuro exam/science discussion with Dr. Lynch, ended my visit at CHOP. I had cruised through all my testing in under 4 hours and reluctantly got in my car for the long drive home.

PatientPerspectiveAlex3Since that first visit, I’ve been back three other times. Twice completing much of the same testing – by now I have the schedule down and enjoy seeing everyone for each test. The other time involved several blood draws to look into the pharmacokinetics of the drug (or placebo – it is a double blind trial!). I was surprised to run into several other FA’ers at the hospital that day and to meet the Regner family from Maryland. It was fun talking to them and meeting another Chemical Engineer with FA (we are gluttons for self-torture). I may not have met them if not for the trial – I’m glad our paths crossed that day!

I am thoroughly enjoying this trial and plan to be involved in others going forward. For me, I like having some involvement in the research process; learning more about the testing and drug trial process intrigues me. Also, just doing something different keeps my mind off the day-to-day worries and keeps me motivated. It is a time commitment for several months, but it’s also a new adventure I keep looking forward to.

I won’t make the blanket statement that everyone should participate in a clinical trial – it is a personal decision that is strongly dependent on your situation. I will say that if you are starting to consider getting involved, just do it (sorry Nike). Start talking to other people – FA’ers, friends, family, doctors, etc. to hash out any concerns and gain others’ support. Start reading – browse medical papers, press releases from drug companies, research findings, trial details, etc. to get a better understanding of potential benefits, risks, and expectations to participate (this is where I talked with my doctor to help understand a lot of the medical jargon). The more you know, the more comfortable you will be going into it. And once you start, the research coordinators and testing staff will be friendly and supportive, allowing you to relax and enjoy the whole process!

For an up to date list of Active Clinical Trials, please click HERE. The FARA Patient Registry is the best way to receive prompt notification of opportunities to participate in a clinical trial or research study. Please click HERE to register. Thank you!