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FARAFARA Cure FA

Patient Perspective: Jake's Experience Participating in Clinical Research Studies

JakeJuip9Hi! My name is Jake and I want to tell you about being in a clinical trial. But first, let me introduce myself. I'm 10-years-old and in 5th grade. I live in Grosse Pointe, Michigan. I was diagnosed with Friedreich's Ataxia in August 2016 because I was stumbling around a lot. Doctors looked at me more, and we found out that I have FA.

People might think biomarker studies and clinical trials are scary and embarrassing, but it's actually just you and a team of awesome doctors. I've been in four biomarker studies and one clinical trial, and I can tell you firsthand that they're not scary. They are exciting and full of hope and show you that they're getting closer to a cure. 

The purpose of a clinical trial isn't just for you. It's to help everyone with your same disease to help the doctors better understand what the disease is and how to cure it.

In the trials and studies, they run tests such as the FARS test, blood draws, and nerve conduction studies.

Some of the really enjoyable things about biomarker studies and clinical trials are: 

  • You get to see new sights and travel to new places. On the way to a study at the University of Rochester, we visited Niagara Falls. In Philadelphia, we went to Independence Hall. On another trip to Philadelphia, we took a side trip to New York City and visited the Statue of Liberty.

  • You get to meet new people. All of these people know about Friedreich's Ataxia and want to help you. Before I started participating in clinical trials, I didn't know that much about FA. Now that I've met all of these fantastic doctors who know a lot about Friedreich's Ataxia, I can use the new information that I learned from them to improve how FA affects me. For example, they taught me that exercise is really important, so I joined my school's basketball team. I probably wouldn't have done that if Dr. Lin hadn't told me how important exercise was. 

  • JakeJuipFor my clinical trial, I got to meet Dr. Lynch. He's funny, cool, nice, and smart. Plus, he answers all of my questions that usual people wouldn't have the answers to.

  • You get to play hooky from school. (But you still have to do make-up work.)

  • If it's a good medication in the clinical trial, you get to have a break from Friedreich's Ataxia and you can almost walk again.

  • You get to learn a lot of stuff from everything you see, you learn lots of new medical terms, and you get to have a lot of new experiences that not a lot of people have.

  • For one of my biomarker studies, I had an echocardiogram and a cardiac MRI. They gave the results of those tests to my cardiologist, so I was able to help FA research and get my tests done at the same time. I had to get those tests anyway. Now, the tests help more than just myself - they help everyone with FA.

  • Before we leave for a clinical trial or biomarker study, my mom always takes me to Einstein's for chocolate chip bagels. Yum!

Biomarker studies and clinical trials aren't all fun and games. Some of the bad stuff about them are:

  • Some of the tests can be boring, but if you get certain doctors they can spice it up and make it fun.
  • You have to sit around and do a lot of waiting.
  • There are painful tests such as the blood draw and the nerve conduction study. But I'm a champ at blood tests, so I've taught myself not to let it bother me.

After all of this, you might be compelled to join biomarker studies and clinical trials. At my first clinical trial, I wasn't sure that I wanted to be in it, but now I like going out to CHOP and meeting with the one-and-only Dr. Lynch. Just know that whatever you're doing in the tests is helping science and future of Friedreich's Ataxia.

If you want to learn more about FA and me, I made an awesome video called Jake and Friedreich's Ataxia. You can watch it HERE.

If you want to write fanmail to me, you can add a comment to my video.

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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