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FARAFARA Cure FA

Chelsea Conley

Chelsea ConleyI was 12 years old when I played basketball for my school. That is when I first started getting chest pains that kept me off of the court a lot that season and I never played again. I was misdiagnosed with exercise-induced asthma. It wasn't until 5 years later that I was correctly diagnosed with hypertrophic cardiomyopathy. When I was 15 I got mono, which kept me down for weeks. This was the unfortunate beginning of my symptoms, however, I did make it through high school graduation in high heels (barely)!

 

Fast forward to age 24, when I was correctly diagnosed with FA at The Ohio State University. This is when I got my first walker, which has since upgraded to a manual wheelchair I grew up with my face constantly buried in a book. I never went anywhere without one; school, basketball practice, even a trip to the mall meant I had a book in my purse. After high school, I wanted to move to California and go to UCLA. Naturally, I wanted to excel in creative writing and become an English Lit teacher. Since I didn't know what was wrong with me, I decided to stay home and went to a local technical college where I studied Business Management.

 

I actively volunteer in my community as much as I can. My mom always called me her "save the whales" baby. It is that passion for helping people and animals that motivated me to start an annual fundraiser for FARA revolving around my favorite holiday, Halloween. Costume for a Cure has been a huge success - raising around $15,000 for FA research in our two years (so far).


One of my favorite quotes is, "Fall down seven times, stand up eight."

 

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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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