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FARAFARA Cure FA

Patient Perspective: Shandra's Experience Participating in a Clinical Study

Shandra PPerspective 1Hi! My name is Shandra Trantham and I am 20 years old. In early 2010, I was diagnosed with Friedreich’s Ataxia, after years of wondering what was going on with my body. I was only 12 years old and my parents wanted me to live my life as normally as possible, so I only went to the necessary doctors’ appointments. As I grew up, I taught myself everything I could about FA and clinical trials. I decided to apply to USF for undergrad, so I could easily participate in these clinical trials and studies, and I got accepted. Between my classes I participated in Moxie Part 1, RT001, the Gait and Balance Study, and the Natural History study. By mid-2017, most of the studies I had done were finishing up or completed and there was nothing left for me to do at the time in Tampa. Some of my closest FAmily friends (the Maugee family) told me about a study going on at UF, the Biomarkers Study. My friends Christian and Isabel Maugee were both enrolled in the study, which aims to collect data and samples to advance Dr. Byrne’s gene therapy research. It is a 5-year study with visits every 6 months, and I was only 2 hours away from UF by car, so I decided to sign up. 

Shandra PPerspective 2My first study visit was a week after my classes ended, on December 11th and 12th. I was excited to see Dr. Byrne and Dr. Corti again, whom I just hung out with 3 weeks prior at the Ride Ataxia in Orlando. I was also excited to be in a study again, as getting involved in research is one of the more exciting parts of living with FA in my opinion.

On December 10th I left home to begin my solo adventure to Gainesville! Both days of my study schedule were jam-packed with tests and procedures. It was like camp, but instead of canoeing and making smores I’d be doing the infamous peg test and pedaling an exercise bike (which is just as fun, to me!). In total there was the clinical exam, two motor control tests, an EKG, echocardiogram, exercise bike test, cardiac MRI, and most memorably: the muscle and skin biopsies! The biopsies were optional, but I knew just how precious a muscle sample could be to FA research, so I didn’t think twice about opting in! It’s pretty cool how before my diagnosis, multiple people had to hold me down at once to take my blood. I had a fear of needles so severe that I’d cry at even the mention of needing a shot. But here I was in 2017, watching my biopsy procedure AND having a nurse film it so I could watch it again later. I was numbed really well and didn’t feel any pain!

Shandra PPerspective 3


Participating in research certainly cured my needle phobia, and it is so important in helping the scientists find a cure for FA. The motor control tests were also pretty interesting. It was almost like a game to twitch my muscle the right amount to hit a target! Agostina, the graduate student running the test, had me sign my best attempt and hang it on the wall. I took a selfie with Agostina, Jessica (the research coordinator) and the attempt that’s on the wall now. My next study visit should be in June and I can’t wait!

ShandraTrantham sig 17

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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