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Living with a rare disease, making a difference

By Drew Leathers, Special to CNN
updated 10:52 AM EST, Thu February 21, 2013
STORY HIGHLIGHTS
  • Drew Leathers says he has faced "immense trials" living with neurofibromatosis
  • His brother and friends have founded the Cupid's Undie Run team to raise funds
  • The run this year raised $1.3 million for neurofibromatosis research, Leathers says

Editor's note: In the Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle -- injury, illness or other hardship -- they tapped their inner strength and found resilience they didn't know they possessed. When Drew Leathers was diagnosed with neurofibromatosis, or NF, his family knew at the time there wasn't much hope. His brother and others came up with the Cupid's Undie Race to raise funds for research.

(CNN) -- When I was diagnosed with neurofibromatosis, I was told it wasn't going to be a big deal. Things may change, but hopefully not much.

Unfortunately, my form of the genetic disorder has caused thousands of tumors throughout my body, and pain that I never thought possible. I spent more than 180 days in a hospital room 1,000 miles from home and have had basically every plan in my life change.

But through these immense trials, when I was ready to give up, when I wanted to let go, my family, my community and my doctors were there to fight for me.

When I first heard what my brother Chad's friend Brendan Hanrahan had come up with, I thought it was hilarious, and would surely get them arrested. But leave it to them to make it actually work.

I mean, it is incredible really, what the Cupid's Undie Run team has been able to do in three years. This year alone, the events raised more than $1.3 million for neurofibromatosis research. Who would have thought that running around in your underwear could do such good?

Seemingly every day, I am reminded how amazing and dedicated our friends are. Hanrahan, his fiancee, Tamara Forys, and Bobby Gill, to name just a few, take hours and hours of their spare time to make this race work. They get nothing in return, other than the joy of seeing a good idea make a difference in people's lives. I'm just lucky to be one of those people.

Since my brother joined the Children's Tumor Foundation to raise money for research and increase awareness of neurofibromatosis, I have been prescribed the off-label use of a cancer drug to shrink my tumors, and the results have been nothing short of miraculous.

Cupid's Undie Run: Benefiting the Children's Tumor Foundation sans pants

I have gone from being bedridden to driving, from a regiment of pain killers to almost none, and now I'm planning to go back to school to become a math teacher.

I would never have chosen to have this disorder or to fight this fight, but it does give a unique opportunity to see the best in people. This year, Cupid's was held in 18 cities, with countless volunteers dedicating their free time. People often tell me that I'm an "inspiration," but to me, these volunteers, this team -- they are my inspiration.

Neurofibromatosis is a terrible thing, but with an organization like the Children's Tumor Foundation, and with people like those who make Cupid's possible, I have an unwavering belief that nothing will stop us from ending this disease.

The neurofibromatosis community will be forever grateful for their gift, and all I can do is say thank you.

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