BENEFITING: ALS Association Greater New York Chapter
ORGANIZER: ALS Association Greater New York Chapter
EVENT DATE: Nov 03, 2013
I began my journey with ALS on February 8th, 1997 when I was 8 years old. When my dad got home from work we were supposed to go outside and throw around the baseball, as we did every day, but that day was different. My father, Michael Connelly, at the age of 40, was diagnosed with ALS and was slapped with the harsh reality that he would not be around to see his three sons grow up. As the oldest of three boys, this hit me hard. My mom, brothers and I, with the help of many friends and family, transitioned through the steady decline of my father's abilities and dignity until the disease took his life on March 17th, 2000. One of my greatest memories of my father during his illness was the fact that he always maintained a positive attitude no matter what stage of the disease. I'll always remember his smile during the darkest of times.
Six months before my father passed away, his childhood friend, Mark Velguth, was diagnosed with ALS. Mark came to visit us in Tampa and the reunion of these two friends now battling ALS was heart wrenching and will remain with me forever. Mark eventually passed away in 2003.
I was once again faced with ALS as a teenager when my high school friend's father, Steve Carpenter, was diagnosed and passed away from the disease.
The FDA classifies ALS as a rare disease, one that affects 2 in every 100,000 people per year. In my experience, it affects one out of every two parents. In my mother's experience, it affects one out of every spouse. In my grandparent's experience, it affects one out of every four children.
My hope is for a cure, so no other son or daughter has to grow up without their father or mother. I choose to be hopeful, to advocate, to know I have done all I can to see a world without ALS someday and the privilege to run in the NYC Marathon not only for these three individuals, but for all others affected by this terrible disease past, present and future, is my first step toward achieving that goal.