PuckSMA - Patrick and Thommy's 2019 Skate-a-thon
We moved into our current home in 2013, and that is when I met Patrick. He was 16 years old then, and I watched him cruising around the neighborhood in his wheelchair, hanging out with friends, and coming to block parties. I had no idea what a miracle that was.
Once I got to know Patrick, I learned that he had been born with a general neuromuscular disease called Spinal Muscular Atrophy (SMA). He didn’t say much about it, except that he had been in a wheelchair his entire life and would likely never walk. I wanted to do something special for Patrick. Of all of my friends, he's the one that helps the most and never complains. So I decided to do a little poking around, and learned some startling facts about SMA.
SMA is the leading cause of death in children under the age of two. And there is no cure. Think about that for a second. Children born with the most severe form of this disease, Level I, will likely not live to see their second birthday! And because it affects only about 1 in 40,000 live births, not much was being done about it. But championed largely by private fundraising and lobbying efforts, parents of these affected children garnered attention for the disease. In 2006, SMA was named a translational disease by the National Institute of Health and federal reaching funding was finally increased in support of developing a cure.
In December of 2016, the first FDA approved treatment for SMA was released, giving hope to many affected children by strengthening muscles and prolonging lives. There remains, however, no cure for this devastating disease.
Won't you join me and Patrick as we take on the fight to finally end this childhood killer? So much has been accomplished, but there are still more steps to be taken. Let’s Puck SMA once and for all!