- TEAM CURE SMA -
SUNDAY, MARCH 17th, 2019 – New York City, NY
@ 7:30 AM
Cure SMA is teaming up to run in the 2019 United Airlines New York City Half Marathon. Please join me and support Cure SMA by making a contribution to my personal fundraising page.
I’m supporting Cure SMA because spinal muscular atrophy is the number one genetic cause of death for infants, and approximately 1 in every 50 individuals is a genetic carrier for SMA. They are uniquely positioned to direct funds to where they can make the greatest difference as quickly as possible. They’ve already invested $70 million in research and provide vital support for families living with SMA, improving their quality of life today; especially for people like my nephew, Theo, who was diagnosed with Type 2 SMA at the beginning of this year. Since then, he continues to receive PT and Spinraza injections to increase his motor function and aid in the production of the protein he needs.
Some of these advances in medicine, support, and care were not realities 2, yes, TWO years ago. That's the age Theo is now. It's thanks to the tireless work of the many initiatives and intelligent people at the Cure SMA organization- including the doctors, scientists, and researchers at Biogen and other laboratories; the efforts of all those who advocate for the amending of state and federal policies that impact nearly all aspects of life for those affected by SMA, and especially the determination, love, selflessness, and day to day strength of Amanda and Vinny (Theo's incredible parents), and other families like mine who raise awareness, share their stories, and do everything they can to give their loved ones active, engaged, and hopeful lives - that it is a reality for Theo and many others.
This is why I am running. I run for Theo - I run for my family - and I run for all those whom this disease has impacted. Every little bit will help continue this lifesaving work and directly support Theo, Amanda and Vinny.
Thank you again for your personal gift to support my efforts to fund vital research and family support programs for those affected by SMA. If you’re interested in learning more about Cure SMA you can visit their website - www.curesma.org