On September 9th, The Rochester Chrome Divas hosted a Scavenger Hunt in the Finger Lakes Region of New York State to raise money for CMT6 research. Mother Nature provided a sunny, cool Fall day for the ride! Ninety-eight participants enjoyed spending the day with Zach Houliares (who has CMT6) and the Divas.
Grown-up “bikers” played duck duck goose, hugged a stranger, and folded laundry for a stranger, all while spreading the word for CMT6. Chrome Divas came in from Xenia, OH, Watertown, NY and Cortland, NY to help support such a worthy cause. Other bike clubs joined the day not only to show the Divas support, but to learn about “Our Man” Zach. Each person had a chance to meet Zach, have their picture taken with him, and see where he worked this past summer.
The day was a great SUCCESS! Everyone returned safely from the hunt and LAUGHING because they had so much fun. Many asked to be alerted about the next event so they can join in again. HNF is happy to report that The Rochester Chrome Divas raised over $11,000 for CMT6 research! Thank you, Divas, and cheers to “Our Man” Zach!
LEARN MORE ABOUT ZACH’S TEAM: WWW.CURECMT.ORG
I wish that I could say that I have CMT6, because I know that I do! But, at the least, 18 years of Neurological Doctors have not agreed to diagnose me with CMT. One Neurologist sent me to Emory University Medical Center. The Neurologist there (Department Head), when I asked him about the possibility of CMT said “No, I know what CMT looks like and you don’t have it. However, he did request that I agree to a biopsy on the nerves and muscles in my left leg. (My numbness began in my left foot in 1990). The biopsy revealed that the sensory nerves were being killed off within the muscles for some reason and he shared that with me on my following visit and then he shared that he really didn’t know what he was doing, so he couldn’t help me. My original Neurologist then sent me to the Mayo Clinic. I spent a week on campus, went through a multitude of tests and then was told that they couldn’t find anything wrong and advised me to go home and to find a good pain management doctor. I am now numb from my toes to my hips on both legs. My left foot has turned in toward the right foot, and my legs are bowed. Both hands are numb and the left arm is numb through my shoulder. I am left handed. My right arm is only numb through the elbow.
Do you know of a Neurologist that is familiar with CMT in the Houston area?