On Monday, April 20, I will be running the Boston Marathon in honor of my nephew, Aidan, and all others who struggle with Rett Syndrome. Aidan is a remarkable 6 year old boy who has beaten the odds. Aidan is one of only a handful of boys living with Rett Syndrome. He spent the first year of his life fighting for his life. He was intubated through numerous battles with pneumonia, RSV, and unspecified respiratory decline. He fought as hard as he possibly could to stay with us and he did it with a smile on his face and a twinkle in his eye. My sister, Tracy, and brother-in-law, Michael, have previously run the marathon to raise awareness about Rett Syndrome and to raise funds to support research in hopes of someday reversing Rett. This year, I have decided to continue our family's fight for this important cause!
Please consider supporting our cause as all funds will benefit research for a cure. You can donate online, via Venmo (@Richard-Kerr-11), via Paypal (paypal.me/rkerr11), or by check payable to Rett Syndrome Association of Massachusetts (or RSAM). Please remember 100% of all donations received go directly to fund research and are entirely tax deductible.
About RSAM and Rett Syndrome:
Team Rett FundRacers will be raising money for research in hopes that the devastating effects of Rett Syndrome can be reversed! Rett syndrome is a unique developmental disorder caused by mutations on the X chromosome on a gene called MECP2. A rare disease, the incidence of Rett syndrome is about 1 in 10,000. The course of Rett syndrome, including the age of onset and severity varies from child to child. As the syndrome progresses, most children lose purposeful use of their hands and the ability to speak. Other symptoms may include loss of motor skills, onset of breathing and cardiac irregularities, seizures, digestive problems, scoliosis, and tremors. Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome!
For more information about RSAM, please visit our website at www.rettsyndromemass.org.