RIchard Dawson via Crowdrise
November 15, 2010
BENEFITING: ADVANCEMENT OF RESEARCH FOR MYOPATHIES
EVENT DATE: Oct 31, 2010
PROJECT / WEB CREATOR / PR/MARKETING: Cara and Kam
RUNNING FOR CARA : Richard, Josh & Vincent
"When I first met Cara, at the coffee shop in our university, I didn’t ask her why she walked with a cane and a limp.
Hereditary Inclusion Body Myopathy (HIBM) is a rare genetic disorder that strikes healthy adults in their 20s. Muscles progressively weaken, leading to severe disability within 10-15 years. Most patients are eventually confined to a wheelchair. As Cara and I became friends, I noticed that she never left her apartment without a leg brace. I learned about the confusion surrounding HIBM: Cara first knew something was wrong only when she began to unexpectedly fall while dancing. Even then, years of misdiagnosis followed until she was finally told she had HIBM in 2007. I’ve witnessed the progression. By the time classes ended and I moved back to the States, she had adopted a second brace in order to provide her the stability to walk. My reaction was one of confusion and fear- terrified that things would progress, uncertain for my new friend’s future. It was terrifying to see a vibrant, young person affected by this terrible disorder in the prime of her life.
Talk about redefining one’s perspective. A childhood of sports, 6 years in the military, and a recent obsession with Crossfit have made me an extremely fit person. Like most of us, I take this for granted. I had a few “painful” moments in my life, or so I thought: a couple knee surgeries; associated experiences with heavy packs, body armor and Iraqi summers; and stress fractures while running a marathon. Perhaps you can imagine how insignificant, even shallow I felt after meeting someone that not only lives with pain in every step, but also treasures each; knowing that there might be a time when walking is no longer possible. Cara and I traveled together a few times; allowing me a small view of life with HIBM. I learned that not all hotels have elevators, always plan taxis ahead of time, and carry extra painkillers. I no longer take every step for granted.
To that end, I’m running for Cara a marathon, something I swore to never do again- to help raise money to fund the cure for HIBM. Perhaps my dear friend, and others with HIBM, can one day run one with us; afterwards we’ll laugh and complain about the “pain” in our feet together; knowing that we’re blessed to have it.
Above access Cara's story