Miles Rubin collecte des fonds
Support Miles' (Now) 60-Mile Run for Rett Syndrome
My name is Miles, I am 13 years old, and I am running 50 miles this summer to try to help raise awareness and funds for Rett Syndrome. A friend of mine was diagnosed with Rett Syndrome when we were three years old. Rett Syndrome is a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments, impacting nearly every aspect of everyday life. It affects 1 in every 10,000 females across the globe.
Individuals who suffer from Rett Syndrome begin to develop like any other child. Between 6 and 18 months, though, they begin to miss developmental milestones and lose abilities that they have previously gained. In addition to other challenges, they can lose their ability to speak, walk, eat, use their hands, and even breathe easily. It has been described as having the symptoms of autism, cerebral palsy, Parkinson’s, epilepsy, and anxiety disorder all in one little girl. People with Rett Syndrome understand the world around them. They just struggle to communicate and get their body to do what they would want or need it to.
Scientists have not yet found a cure for Rett Syndrome, but there is hope that they can in the future. The Rett Syndrome Research Trust is the largest fundraising organization that is dedicated to finding a cure for this awful disease.
Despite having Rett Syndrome, my friend works incredibly hard to live her life to the fullest and tries things that seem impossible for someone with Rett Syndrome. Every day she proves she can do anything she sets her mind to. She is an inspiration not only to individuals and families directly impacted by Rett Syndrome, but to me as well.
I am not a fan of running. The idea of running 50 miles in 8 weeks is daunting to me. That said, daunting challenges are what my friend and others with Rett Syndrome face every day. If you would consider sponsoring me in my 50 miles challenge to benefit the Rett Syndrome Research Trust, I would greatly appreciate it. No donation is too small to matter or too large that it wouldn't be put to good use. Please feel free to pass this along to anyone you know and to take some time to learn more about Rett Syndrome and what we can do to stop it and to help support families that are impacted by it. Thank you so much!
Miles
p.s. - My parents also wanted me to let you know that your donation is tax deductible!
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