I was diagnosed with FA 15 years ago. I was in my late 20s, unmarried and no kids and newly diagnosed with a disease that had no cure and no approved therapies. I wanted to give back to the community and decided participating in research was my best option. My work allowed me to travel so I was an ideal candidate to participate in as much research as I could! In 15 years, I have participated in 3 separate clinical trials for new drug therapies and 5 clinical studies, which included 4 biomarker studies and the ongoing natural history study.
From my perspective, I felt a responsibility to contribute to the community. We all want a cure and there are many ways the community can help. You can advocate Congress for research funding, you can write cards to generous folks who donate to research, along with many other contributions. My initial contribution was to participate in research.
As is life, participating in research is a choice you make and can be fun and exciting or dull and boring, it’s up to you on your mindset. One way to start contributing is by enrolling in natural history studies or biomarker studies. These are non-interventional studies. These types of studies help researchers measure changes in FA or develop biomarkers. Clinical trials for drugs are interventional and can sometimes involve more visits, but I found ways to make those visits fun, and I know participation contributes immensely to the community.
I would encourage all FA patients to think about how they might contribute to research. Here are some positive experiences that have resulted from my participation:
- Met the awesome folks researching FA and working on treatments. I’ve made lifelong friendships with the people I’ve met.
- Felt good about contributing my time, effort, and data to the community.
- An opportunity to travel to new places.
Having participated in so many trials, I would suggest:
- Do your due diligence! Remember that this is clinical research. It is still an experiment designed to answer key questions. Talk with your family and friends, ask the trial coordinator about # of visits and what is involved with the study. The informed consent process will be an opportunity to learn more about the risks and potential benefits.
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Don’t make assumptions! If you are not clear on what other medications you can remain on or who pays for travel or any other assumption, get it cleared up with the study coordinator before you decide whether to participate. You want to be sure you can adhere to all of the requirements and study visits of the trial before signing off. Once you make the commitment, it is really important to try to keep that commitment to the trial or study.
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Make it fun! If the study involves travel, visit a zoo or baseball game in that city while you’re there. Make new friends and enjoy the time you invest in the process.
Written by
Joe Tyler