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.