Earlier this year, after substantial advocacy and pursuit of answers by his parents, Anne and Mark – Henry was diagnosed with Spinal Muscular Atrophy (SMA). SMA is rare genetic disease that affects the part of the nervous system that controls voluntary muscle movement – and can take away the ability for those affected to walk, eat, or breathe.
Henry and his amazing parents are tackling SMA head on – with an attitude nothing short of inspiring. I have been blessed by nearly 14 years of friendship with Henry’s parents – and I see their determination and devotion in Henry’s strong fight against SMA. Henry has made lots of great progress with lots of hard work, countless hours of PT, and as a recipient Spinraza – the first ever drug treatment available for SMA. To support Henry’s fight against SMA – we need to ensure continued support for SMA research, treatment and care. For this reason - I am running.
After having spent 5 years spent working in MassGeneral’s Neurology Department– I am deeply aware of the importance of research, treatment, and support to those affected by Neuromuscular disorders. In support of Hammerin Hank the Tank, his family, and all who affected by SMA - I have joined the MDA Team Momentum running this year’s Marine Corps Marathon. Donations made will be targeted explicitly for SMA – to fund further research grants, advocacy, and support for families like Henry.
Please join me rooting for Hammerin Hank the Tank as he crushes SMA!
Please follow Henry’s story and fight against SMA on facebook at: https://www.facebook.com/hammerinhankthetank/
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