On Sunday, May 26th, Regina Philipps will participate in the Vermont City Marathon and has already raised over $13,000 for Team Cure SMA while training.
As an avid runner, Regina joined Team Cure SMA along with her sister, Amanda. They wanted to run the Vermont City Marathon with Team Cure SMA in honor of Regina’s son Shane, who was diagnosed with SMA at around 10 months old.
“Shane was a very strong and active baby,” Regina said. “He was holding his head up on his own from birth. He rolled at 2 weeks old. He had attained the ability to sit if we put him in that position, but he had lost everything else – the ability to roll, to hold his head up if he was on his stomach, to move his legs, or to raise his arms more than a few inches.”
Shane keeps both Regina and Amanda motivated to finish the race. “We feel as though Shane runs a marathon every day with all of the effort it takes him to do even the simplest tasks. Shane is too young to tell us how he feels, so this is the closest I can come to trying to understand what he is going through.”
In addition to running in honor of Shane, Regina runs to raise awareness and funds for Cure SMA because of the impact the organization has had on Shane’s life. When Shane was first diagnosed, Cure SMA provided Shane with a care package and a wagon. Cure SMA also invested in the first-approved treatment for SMA, Spinraza, which has significantly improved Shane’s muscular strength.
Team Cure SMA is an endurance program designed to connect runners and cyclists with Cure SMA. Team Cure SMA athletes from across the country can choose to participate in a variety of endurance events including wheelchair-friendly races.