Recognizing academic achievementin the rare disease community

2015 Recipient

2015 Recipient



19 years old
Clayton, North Carolina

High school:
Johnston County Early College Academy
Smithfield, North Carolina
Graduated May 2015.

University of North Carolina, Wilmington.
Fall 2015.

Rare disorder:
Fabry disease. I was diagnosed when I was 5 years old. My Grandfather also had Fabry, so it wasn’t difficult to get diagnosed. I have symptoms, but I haven’t let it be a huge hindrance in my life. I’ve used having the disorder as a way to reach out and motivate and inspire people. I’ve also participated in programs to try to raise awareness of Fabry disease.

Favorite subjects:
English, history and liberal arts classes.

Favorite activities:
I’ve played rugby for the past 6 years and plan to continue to play in college. I also do mixed martial arts like Brazilian jujitsu. My favorite activity, by far, however, is musical theatre. I have already been in 4 musicals this year. I love to dance and sing and entertain; it is a great creative outlet.

Academic and professional plans:
I’m planning to go to school to study film. I’d like to make movies and am interested in all aspects of film – producing, editing and acting in movies. I like the idea of having complete control of how I want it to turn out. I hope to produce meaningful movies that spread positive messages. I want people to feel good after seeing my movies.

Proudest moment to date:
I think my proudest moment to date would have to be the time I was selected to sing with the North Carolina Conference Pilgrimage House Band. Pilgrimage is a Christian youth event that gathers thousands of youth in Fayetteville, NC for a weekend of worship. There is a youth band that leads music throughout the weekend and I was one of the singers. It was a great honor to have been chosen out of all those who auditioned, and also gave a great feeling of worship and love to participate.

How I found out I was the ACES 2015 recipient:
My phone rang and I thought it was a telemarketer, which I usually don’t answer. But for some reason I did answer the call and found out I won. I freaked out a bit on the phone because it is a national scholarship and I was completely surprised.

Advice for students applying for ACES next year:
Focus on the good you can do. I would tell them to tell their story truthfully, no matter what it is they are dealing with, but to focus on being positive and the good you can do. Use that positive focus to motivate you; nothing can stop you if you want something bad enough!

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