I am participating in the Cycle 4 CMT event to raise money for the Charcot-Marie-Tooth Association (CMTA). The CMTA is a 501c3 non-profit working with world-class partners to advance treatment-oriented research through STAR (Strategy to Accelerate Research).
I was diagnosed when I was in college. I never gave it much thought after that first time hearing the name. But it was a name for what had been in my family for generations. It was always just called "Griffiths Feet" because so many members of my Mom's family had horrible, deformed feet or at least what they thought was weak ankles. That's what I thought I had when I walked into that orthopedic office one day. I was lucky! That first visit led to my diagnosis!
It really hit home when our son was about 7 and the gym teacher took us aside at a school event and said "there is something very different about Zack than the other kids." The lightbulb went off immediately, and our true journey began that night. We have seen amazing doctors at 2 CMTA Centers of Excellence. In the fall of 2009, I became the Branch Leader for the Central NJ CMTA Branch.
To people with CMT, STAR research for a cure means regaining feeling in the extremities, walking without tripping, buttoning shirts, and easily picking up change off a flat surface. STAR is synonymous with stopping the progression of CMT and living a life without limitations.
STAR is hope for a future without CMT.
I support the CMTA because when I was scrambling for information after our son was diagnosed, the CMTA was there for me. In the years since, the education, the medical care, and the amazing connections made have been invaluable to our family. I help lead the Central NJ Walk4CMT to give back for all we have been blessed to receive.
Please help make a difference in the lives of those living with CMT and for our generations to come.
Together, with your support, we can reach our fundraising goal.
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