Our son Will led his Boston Children’s Hospital Walk Team - Will’s Team for the Beggs Lab for Congenital Myopathy Research - for 13 years! Previously, Will also led a team for the Complex Care Service for 2 years, for a total of 15 years leading a team for the BCH Walk!
With the support of family & friends, and of course Will’s marathon partner, Kate, and her above and beyond fundraising, Will frequently topped the leader board for the BCH walk and collectively raised over $100,000 to support important research at the Beggs Lab in his lifetime.
It is with the greatest heartache that we share that Will passed away this past November, from complications from Myotubular Myopathy, the rare disease that he so bravely lived with for 20 years. It is also the disease that Will so valiantly advocated for, participated in important research for, and raised funds to support this research through the Beggs Lab. We will honor Will’s walk team tradition and this year will be walking in Will’s memory.
Thank you for all for your continued support of Will, our amazing STRONGWILL! Boston Children’s Hospital, both through the exceptional care he received and research he had the opportunity to be a part of, is helping to pave the way for potential treatments for congenital myopathies, including MTM.
Let’s hit this year’s walk out of the park for Will!
Mark & Erin