While in the gym this morning, someone asked me “…so why do you run?” Here’s my answer:
I run for my brothers.
Some of you may not know my story, so I’ll give you the Crib Notes version. When I was 3, my brother Bobby was born. He was diagnosed with Type 1 Spinal Muscular Atrophy (“SMA”) which, at the time, was a disease that not many people actually heard of. Bobby passed away 6 months later. 2 years later, my brother Johnny was born with the same exact diagnosis – and he passed on as well, 4 months after birth. I made a promise to myself that I would do what I could to help fight this disease – and I am trying to keep that promise by raising money and awareness for charity. My friends and I started Do Away With SMA (“DAWS”) in January 2014, in order to focus our efforts on fighting this disease. Please check us out, if you have a moment at http://www.doawaywithsma.org.
A Quick Synopsis of Spinal Muscular Atrophy (“SMA”)
SMA, as described by the Spinal Muscular Atrophy Clinical Research Center within Columbia University’s Department of Neurology (http://columbiasma.org/about.html), is “a genetic disease causing degeneration of motor neurons in the spinal cord. Motor neurons are nerve cells that carry information from our brain to the muscle resulting in muscle movement. In patients with SMA these motor neurons are not fully functional resulting in muscle weakness and wasting.”
Some quick facts about SMA:
• It is the number one genetic killer of children in the world.
• Approximately 1 in 6,000-10,000 babies born are affected.
• One in 40 people are carriers – and most don’t know it.
• There is no approved cure for SMA.
• There are four types of SMA. Type I is the most common (found in 60% of the patients affected), and is the most severe. Types II and III are also diagnosed in a patient before he /she reaches 18 months. Type IV can first present itself in a patient at the approximate age of 18, but normally presents itself in patients around the age of 35.