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FARAFARA Cure FA

Patient Perspective: Michael's Experience Participating in a Clinical Trial

MichaelGehr1On January 19, 2016, I was diagnosed with FA. My family and I decided to take an educated approach, and we did just that. Within a few weeks, we had read countless websites about the symptoms and what we could expect with my new diagnosis. Soon, we began learning about the science behind FA, and we eventually found ourselves reading about clinical trials. By April, I was signed up for one; my first visit was to be on the 15th.

Even though it had been less than 3 months since my diagnosis, I knew that a clinical trial was something I wanted to involve myself in. It was something that just made sense for me. Added bonus: The drug company, Reata, was able to pay for plane tickets, meals, etc.! I knew that as well as being helpful for the community and everyone looking for a cure for FA, I may be able to benefit also. For example, one of the tests I did was a stress test, where progression is measured by viewing one’s exercise capacity via a recumbent bicycle. Largely because of this test, my family purchased an exercise bike which I use daily. As another example, since I am in highschool, I knew that this trip would be a learning experience for me. I was able to learn a lot about restrictions and necessary testing for a clinical trial. Every doctor was able to teach me about their specific test, and the lead doctor, Dr. Hoyle, taught me about basic neurologic tests, and even some about myself. 

 

MichaelGehr2The first, or “screening”, visit ended up being the longest one. This was because it required me to read over and sign a lot of paperwork. I also met my study coordinator, Louisa, as well as the other doctors who would be helping/observing me over the 5 months that the study was to take place. I experienced many new tests, but each one began with the words “Remember, you can opt out. You don’t have to do this if you don’t want to.” Though I never did, hearing this showed how understanding and kind-hearted these people were.

My clinical trial took place at The Ohio State University. This was the only location for me, as every other location required you to be at least 18 years old. OSU, however required you to be at least 16 years old, and I was only 16 at the time. We probably would have chosen OSU anyway, though, as lots of my dad’s family lives around central Ohio. So, as well as participating in and learning about a research trial, I got to visit some family that I wouldn’t have seen otherwise.

This trial was really an amazing experience. I got to eat some delicious food (Tommy’s Subs and Buckeye Donuts), meet some really cool new people (Louisa and Dr. Hoyle), and see some dearly missed family. I would very much recommend this to anyone who wants to help his or her self, help a community, try new or different things, and maybe even learn something in the process!!

To find a list of studies that are looking for volunteers, please visit curefa.org/active-clinical-trials.

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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