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FARAFARA Cure FA

Patient Perspective: Jamie & Jean's Experience Participating in the Natural History Study

PatientPerspectiveJamiePlourdeI have been participating in the Natural History Study for as long as I can remember; for me, it just made sense to participate since I was going to see Dr. Lynch in Philadelphia anyway for my yearly visit. It seemed like a no brainer, especially since there's no extra traveling or work required.

This study is completely painless: to be honest I didn't think they were doing any research at first, I thought it was just part of my check up. You do have to answer some questions about your health and give cheek swabs. Dr. Lynch is such a fun doctor, he makes it seem like you aren't at a check up at all. I can honestly say that his research is enjoyable. I usually spend most of the visit laughing, and when I'm leaving I feel optimistic. I don't know how many people can say that their research is "fun"? :) 

 For anyone who is not currently participating in the Natural History Study, I would highly recommend it.

JamiePlourdesignature Through participating in this incredibly simple research, I can feel like I am doing my part in bettering my life and the lives of others.. Knowledge is the key to unlocking a brighter future. 

 



I have been seeing Dr. Lynch at the Children’s Hospital of Philadelphia for about 15 years. Since I began seeing him, I have been participating in the natural history studies of FA. Doing so has always seemed like a no brainer to me. When I first started I understood that in order to understand whether or not a treatment being studied is impacting FA, they needed a baseline. The baseline gives them an understanding of how the disease typically progresses so new treatments can be compared to this baseline. Contributing to the understanding of the disease to advance treatments: no brainer. None of it (speaking, quality of life questionnaires, vision testing, and more) is invasive. Noninvasive: no brainer. It does add time to my annual appointment, but that just means more time with Dr. Lynch and his team. Since I love them, this a real no brainer. I have already travelled over 6 hours to see them another hour seems like nothing.

Since I began participating in the natural history studies, there is A LOT more research happening. This, of course, makes me hopeful. It makes me so proud of my long term participation to learn from Jen Farmer, FARA’s Executive Director, to know that researchers are drawn to FA in part because there is this strong natural history data. Hopeful and proud: no brainer!

Obviously, I have had the pleasure (I know, pleasure? It really is because of what I get personally out of my part in advancing the research.) of participating in natural history studies for years. But your future participation will advance the field! Your contribution is important.

If you are interested in participating in the Natural History Study, please contact a study coordinator at a CCRN site near you.

JeanWalsh2015JeanWalshsignature

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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