BENEFITING: ADVANCEMENT OF RESEARCH FOR MYOPATHIES
EVENT DATE: Oct 25, 2010
I've known Kam since our early sketching days in the quads of CCS back in 2001/2002. She stood out with her little walking cane. I didn't think much of it, and figured she must've been recovering from an accident of sorts.
Kam, however clarified the cane mystery, and told me she actually had a rare progressive and debilitating muscle-wasting disorder, HIBM--a genetic disease that affects an uber-small number of people, so small they call it the orphan disease. Research is limited and funding even more, despite the fact that scientific evidence suggests that HIBM might be treatable via gene therapy. Gene therapy would be the method that would actually cure it, or stop the progression, and then one day allow for muscle regeneration
In order to verify this research it needs to be tested on an actual HIBM patient; it also needs funding to initiate the procedure and follow-up testing. So once the money is raised, guess who would benefit from the testing? Yes, you got that right--it would be KAM!
Basically, the hypothesis and research is there; the potential of saving many lives from pain and suffering is essentially lurking over the horizon; the candidates for the human trials are available---all the organization needs to start this potential breakthrough is MONEY!
So, instead of (or along with ;)) buying me a present this year, I would love and appreciate it even more if you instead donated whatever you can to HIBM's research funding so this treatment can soon be available to Kam and other affected patients. Unlike back in 2001/2002, today Kam can't walk without her walker at all, and oftentimes relies on a wheelchair--something that is extremely frustrating for her, considering how active and athletic she was before.
So please, donate! Tell your friends and their friend's friends. Tell everyone. Let's get Kam's feet back to frolicking on that green, green grass.