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FARAFARA Cure FA

Shandra Trantham

Shandra TranthamHi! My name is Shandra Trantham. I am 21 years old and live in Gainesville, Florida. I remember being just 8 years old when I first noticed my balance was deteriorating. I was in gymnastics and suddenly couldn't walk on the balance beam anymore. A few years after that I developed scoliosis and was put in a brace. Finally, at the age of 12 everything came together. My ortho doctor noticed my gait as I walked down the hallway. I still remember that night after the appointment, my parents kept asking me to walk back and forth so they could see my abnormal walking. I was sent to a neurologist and a while later, tested positive for FA! That same year I had a spinal fusion which really knocked me off my feet. Through my incredible stubbornness, I got most of my strength back. To this day, I walk 1-2 miles daily around school with the help of my walker. I've had a few bad falls, but that only makes me more hardcore! (Like the time I fell hard on my way to a final exam and took it anyways while dripping blood from my face). I aced it, by the way!

 

This past summer I graduated with my B.S in Cell and Molecular Biology and started a Ph.D. program in Neurogenetics at the University of Florida. My plan has always been to study FA, but I only got myself involved socially with the community in the last two years. After my first event, the patient-focused FDA meeting, I formed strong friendships with some of the FARA ambassadors. They made me feel a sense of belonging I had never experienced, and I got to see the important work they do in the community. Soon after that, I knew I wanted to be a FARA ambassador!

Outside of school/my research, I love to hang out with friends and play Pokémon Go. Being a FARA ambassador has opened the door to friendships all around the world and I've had the opportunity to travel and educate many people. Since my first trip to Washington DC for the FDA meeting, I've been to Philly, Atlanta, California, Oklahoma, and various cities in Florida. I also like to participate in any clinical studies and drug trials I can get my hands on. As much as FA sucks, I have to thank it for introducing me to some amazing people and giving me a cool career path. I'm so excited to continue serving as an ambassador and meet even more people!


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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