Jeanhee Kim via Crowdrise
May 05, 2013
I run a half marathon every year for my niece Sophie (with the snowman at left) and to raise funds for CureCMD. Sophie is 6 years old and has Ullrich CMD, an extremely rare genetic condition. She uses a power wheelchair to get around and has very low muscle tone throughout her body. But her mind is untouched and she is fiercely intelligent, outgoing, and has a fun-loving, sassy spirit. Her big aspiration is to be a pop singer, and she loves to belt out Taylor Swift, Selena Gomez, Katy Perry, and Adele (scroll to the video at left when she sang at a fundraiser for CureCMD!).
Ullrich CMD is a genetic disorder that leaves children like Sophie without Collagen VI in any of their cells. With so few people in the world who have Ullrich, there are no treatments and no cure. There have been nearly no trials or experiments undertaken to even try. Money is needed to fund researchers who are willing to look at this rare disorder. Meanwhile, time is running out. Sophie's condition is degenerative.
Ironically, Collagen as an anti-aging beauty treatment is available in drugstores on nearly every corner here in New York City. Think how many millions of dollars must have been poured into experimenting with collagen to fill our lines and wrinkles and none for finding a way for Sophie to walk, breathe freely, and live a longer, stronger life.
I hope you will join me by making a donation. Every dollar is deeply appreciated and will be put to good use!