Dear Friends and Family,
As many of you know, our grandson Cooper was diagnosed with Smith-Magenis syndrome (SMS) soon after he was born. He was enrolled in the early intervention program as soon as he became eligible, and he is now starting pre-K at his local public school with additional support to help him learn, grow, and thrive.
SMS is an exceedingly rare, neurodevelopmental genetic disorder that results from a missing piece of material on the 17th chromosome. It can affect many parts of a child’s life, including learning, development, behavior, communication, and sleep. Children with SMS may face significant challenges, but they are also loving, unique, and full of potential.
Until our family was touched by SMS, we had never heard of it and did not know how deeply it can affect a child and the people who love them. Cooper is a joyful, determined little boy, and we want him—and all persons living with SMS—to have every chance to thrive.
Research gives families like ours hope. The SMS Research Foundation, SMSRF, supports scientific work aimed at improving knowledge of Smith-Magenis syndrome and advancing treatments to help address some of the most difficult symptoms, including cognitive development and behavioral challenges. Research can lead to better answers, better care, and a better quality of life for children and adults living with SMS. Utilizing the results of SMS research conducted over the last few decades and genomic tools developed more recently, SMSRF has developed a research roadmap to reach implementation of a clinical trial for SMS in 2030.
If you are able, please consider making a donation in honor of Cooper and all children living with Smith-Magenis syndrome. Any amount would mean so much to our family and to the broader SMS community. Your gift would help move research forward and bring hope to families. To reflect the importance of chromosome 17 in SMS, both Michael and I have been walking at least 1.7 miles each day in support of SMS research, and we are asking for your help to raise $1,700 for the SMSRF. If you cannot donate now, sharing this letter or keeping these children and families in your thoughts also makes a difference.
Thank you for taking the time to learn about SMS, for caring about our family, and for helping support research that could change lives.
To learn more about SMS research and the virtual walk to support the SMS Research Foundation please visit the SMS Research Foundation https://secure.qgiv.com/event/1153616
With love and gratitude,
Linda and Michael