Thank you for supporting me and learning more about my story!
In February 2022, I joined a Phase 3 trial for a potential treatment for CMT. In June 2022, I bought my first Trek Bicycle. In August 2022, I rode in my first Cycle4CMT event in Vermont to raise money for research through the Charcot-Marie-Tooth Association - the same research that I was a part of. In May 2023, I was unblinded and was getting active treatment. Results of this trial have not shown what everyone hoped, and unfortunately, the trial was stopped in late December 2023. I never thought that kind of hope would exist in my lifetime, nor did I think I would be cycling so much to help reach these fundraising goals. While my trial didn’t come to fruition in the way I had hoped, there is so much more on the horizon. More hope, more research, more funds to be raised, and more miles to be cycled.
Even on my worst day - when balance is terrible, my feet feel extra heavy, and my legs are tired - getting on my bike brings me immense joy. My balance struggles disappear, and I feel like I can produce strength that I’ve never had when off a bike. My longest single ride so far has been just over 100 miles, and in July 2023, I rode 500 miles across Iowa in a week. I had big cycling goals last year, and while my cycling goals are much smaller this year (due to wedding planning!!!), the heartbreak from my trial ending early makes me even more motivated to raise the money necessary to get the next trial off and running!
I am participating in, and hosting, the second annual Cycle4CMT Raleigh 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).
To people like me with CMT, STAR research for a cure means regaining feeling in the extremities, walking without tripping, buttoning shirts and being able to pick up change off a flat surface with ease. STAR is synonymous with stopping the progression of CMT and living a life free of limitations.
STAR is hope for a future without CMT.
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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