By: Gary Donaldson, community manager, CMT Research Foundation
As I approach my one-year anniversary as the community manager for the CMT Research Foundation, I’ve thought a lot about how I should mark this occasion. I decided the best way to celebrate is by facing the same fear that motivated me to start working in CMT research in the first place: My ability to walk.
As a man living with CMT1X, I have bilateral foot drop, daily pain, an awkward gait and balance issues. During the past year, the nerves and muscles in my feet have slowly begun to die, causing me to no longer feel my toes. This is terrifying. Dedicating my career to finding a cure for CMT has been about saving my ability to walk, remaining independent, and making sure no one with CMT has to fear their future.
From November 1 through December 24, I’ve pledged to walk one million steps to raise money for the CMT Research Foundation to help deliver treatments and cures. This equates to around 18,500 steps per day. Although it will be physically and mentally challenging, come rain, wind or snow, I’ll be pounding the pavement every day to reach this goal and raise as much money as possible to speed scientific breakthroughs.
To find strength during this journey, all I have to do is look at the children in our community with CMT — stories of kids like Leonor and the Baker brothers who don’t yet understand the realities of how CMT will affect them as they grow up. I don’t want these children to live with the same fears I do. I want them to have treatments and cures available.
With scientific advancement, this is a real possibility for them, for me, for us all. The only thing standing in the way is funding. There are a number of promising research projects that the CMT Research Foundation has identified as game-changers that need funding by the end of the year to move forward in 2021. If not me, then who? If not now, then when?
While there are many things those of us with CMT cannot do, we can all be part of advancing the research that will change our lives. While I have chosen to walk one million steps, sharing this post or simply making a donation makes a huge difference. Only by working as a community to support the research that will change our future is how treatments will become available once and for all. I can’t afford to depend on hope any longer. No one with CMT can. It’s time for a treatment.
Will you join me in being part of the solution?
Help Gary Achieve One Million Steps to the Holidays
You can give everyone with CMT more than hope by supporting Gary on his journey to walk one million steps between November 1 and December 24 while living with CMT. Your donation to Gary’s fundraiser will directly support the most promising research that’s solely focused on delivering CMT treatments and cures as quickly as possible. Donate now.