I will be running my 19th Boston Marathon this year and celebrating 14 years of friendship my patient partner Will Ward and his fabulous family. Will just turned 18 last month and is a senior in high school. When Will was four weeks old, doctors discovered Will has Myotubular Myopathy (MTM). MTM greatly impacts Will’s muscles and he needs the assistance of a tracheostomy and ventilator to breathe, and a power wheelchair for mobility. Although Will is unable to vocalize, he “speaks” volumes. Will communicates with his sweet smiles, uses assistive technology, and his sense of humor shines through loud and clear. He loves the Red Sox, enjoys music, and plays on a Challenger baseball team. I have run The Boston Marathon since 2006 in honor of Will and in memory of Steve Burton with Miles for Miracles. The hospital pairs a child patient with a runner as a part of the program. Steve, my former running coach, and friend was paired with Will in 2004. In 2006, Steve was too ill with cancer to run for Will and I offered to run for Will for Steve. Sadly, Steve passed away a few short weeks after the marathon that year. The funds I raise through running the Boston Marathon go to benefit the Beggs Lab Congenital Myopathy Research Fund. Beggs is leading the research effort to find both treatment and a cure for Myotubular Myopathy (MTM). Dr. Beggs’ research has laid the foundation for two very promising treatments being pursued for MTM. In collaboration with a global team of researchers, both gene therapy and enzyme replacement therapies for MTM are in development. There is currently a gene therapy product in clinical trials. Every dollar helps support this research.
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