SMA (spinal muscular atrophy) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
This horric disease claimed the life of my nephew Gavin Christopher Rivers on New Year's Eve 2012 at less than 1 year of age. Needless to say it was a heartbreaking and dreadful event for our entire family. My brother Chris, his wife Aimee and thier daughter Emilee expereinced the devastation of losing an infant to a disease that currently does not have a cure. A disease that deteriorates muscle function to the point that an infant loses the strength to even breath on their own.
While Chris, Aimee and Emilee have demonstrated an extraordinary strength to continue on as a strong family, an inspiration to those around them on a level that they may never truely realize, they do so with a hope that a cure can be found.
How can I help? How can you help? How can we help?
We can all hope and better yet support efforts to find a cure for this illness so that others do not have to expereince the devistation of losing a young one to SMA. We can support those efforts by donating funds to an organization like Families of SMA (curesma.org).
Since 1984, $57 million has been invested in research that has made today’s breakthroughs possible. They advance a comprehensive research program, attacking SMA from all sides. They also provide critical resources for families who have been newly diagnosed, to those living with the illness, and unfortuantely those dealing with the grief and loss.
My efforts are to show support for my nephew, Gavin, his surviving family members, and for the organization that has done so much to help them and others to live with the affects of SMA. I have chosen to run ( but most likely jog :) ) in the New York City Marathon on November 2, 2014 to help raise money to find a cure for SMA. 100% of ALL donations will go Families of SMA (curesma.org).
I will take care of all costs for the race (including travel expensives) and will put in the first $100 into this fundraiser. I will also show support by wearing a custom shirt supporting TEAM GAVIN and CureSMA, and.......... hopefully finish the race!
Your gift will support vital programs for families affected by SMA!