Minutes ago I received an email from a contact at Project ALS stating that I should go ahead and make my travel plans because they would love to have me on their 2013 NYC Marathon team! I am so excited I could seriously pee my pants. I get to run an amazing race and I get to do it for a cause that’s close to my heart.
About 12 years ago my cousin Frank (28 years old) was diagnosed with ALS also known as Lou Gehrig’s Disease.
“Over time, Lou Gehrig’s disease causes these motor neurons in the brain and spinal cord to shrink and disappear, so that the muscles no longer receive signals to move. As a result, the muscles become smaller and weaker. Gradually the body becomes paralyzed.” –source
I watched as my cousin Frank battled the disease for 4 years. Throughout these years he slowly deteriorated. He lost his ability to accomplish everyday tasks such as fixing his food, brushing his teeth and answering his door. Eventually he was unable to chew and swallow, so they placed a feeding tube. At the end of his struggle he could no longer breathe without a ventilator. At 32 years old he reluctantly left us. Frank had so much more living to do, but ALS took that from him.
Frank was young man who knew how to have fun. He liked silly movies, fast cars and hanging out with his friends. Anyone who knew him would describe him as kind and extremely generous. Unfortunately it wasn’t until Frank was diagnosed with ALS that him and I became more than just cousins, he became my friend. While I was in grad school I would go visit him each weekend to help out. I fixed his meals, washed his clothes, cleaned up his house and we hung out. We watched lots of movies together, talked and laughed a lot. It was hard watching him get worse each week, and then having to say a final good-bye.
ALS is a terrible, terrible disease and it needs a cure. Project ALS is crucial to this goal.
“The mission of Project A.L.S.™ is to recruit the world’s best research scientists and clinicians to work together toward an understanding of and the first effective treatments for ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease.”