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FARAFARA Cure FA

Patient Perspective: Sean's Experience Participating in a Clinical Research Study

PatientPerspectiveSeanBaum1Everyone has a part they can play, a role that is essential to our mutual fight against Friedreich’s Ataxia and other rare conditions. For me, I sometimes wish I was a billionaire philanthropist who could fund entire facilities and programs devoted to finding cures. However, it’s safer just to keep my billions to myself. Someone else can be the philanthropist. Actually, someone else will have to do all the philanthropy because my bank account isn’t eligible. Like I said, “sometimes I wish…”

After I was diagnosed in 2007 and every year since then, I ask myself, “what can I do, what part can I play?” A few years ago I got connected with UCLA and enrolled in the ongoing natural history study efforts. They monitor the disease and its progression overall within my body. This study isn’t designed necessarily to identify a cure. However, I believe it is absolutely crucial to the understanding of the disease which directly contributes to cure-discovering efforts and research. Although the data collected from me may or may not help me specifically, I know that it will help someone down the road and I’m happy to be able to invest myself in that manner.

I can do more though, and I want to do more. Several months back I learned about a new clinical trial and I was immediately interested. Sure, there is always some apprehension when talking about a brand new drug that hasn’t been tested in humans yet, but I haven’t felt that the risks were that high compared to the risk of having FA. You are probably aware of some of the symptoms and ultimate prognosis when it comes to living with FA; how much worse can it get? For me, I consider the role I can play and the effect this may have on the bigger picture as a way of managing and contributing to the risk of living with the disease. If I can’t give billions, what can I give? 

 

Time and participation seem to be easier for me to come by than money. So, how can I give of my time and how can I participate. I started looking further into this particular study and although it presented some logistical challenges, I wanted to find a way to make it work! The study was facilitated almost 400 miles away, that’s too far for me to ride my bike! It required bi-weekly visits which is a lot of travel and a lot of time off work. Thankfully I have an employer that is committed to me and my efforts involving FA, and they were willing to be flexible with the time off. The study covered all expenses and so I figured I could make this happen.

I soon learned that there was also a very restrictive diet that was part of the study, this was the most challenging part for me, personally. I love fast food and the greasier a burger and fries the better. As the process began and all the details were discussed and the fine print was read aloud, there were a few moments that I was scared. Will I grow a third arm? Will I get sick and stay sick? Just how crazy might things get? At the same time though, I thought about how much effort and millions had been invested in this drug up to this point, and was convinced that no company would take such a risk without considerable “homework.” So, I decided I was in, I signed all the paperwork and my hand grew tired fast!

PatientPerspectiveSeanBaum2During the actual study I got poked with what seemed like a hundred needles, had to completely change my diet, had to sleep in a hospital bed, missed work, lost out on wages, fell behind in my personal chores, swallowed large horse pills every day and had to struggle through airports every other week, but it was all worth it! I met some amazing people at the study site. The staff I met were amazing and concerned for me as a person and genuinely interested in FA and all the efforts to fight it. But more than that, I know that I played a significant role in fighting this disease. Whether this drug “works” or not, it’s progress. Progress I was a part of. Whether or not it leads to a cure for me, I know that it will lead to a cure eventually and I view it as an honor to be a part of that journey.

With every flight I boarded to head to southern California, I couldn’t help but think about the role Pharma, CNS Labs (my study site), and FARA was playing, in the lives of individuals like me and potentially thousands of others. This disease can often be isolating and leave anyone of us feeling all alone, especially when you hit your head on the dryer three consecutive times because you have poor reflexes and nobody is around to console you, laugh at you, or even get you an ice pack.
I don’t have billions to give toward research, but as long as I am eligible, I will volunteer myself for any progress that promises to move the needle when it comes to fighting Friedreich’s Ataxia. Lots of people have money to give, but without willing participants, their money is useless. Think about your role; what part can you play in fighting this disease? For your generation or another, the process requires willing subjects. And someday, such investments will return a permanent and absolute cure!

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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