May 26, 2016
BENEFITING: Huntington's Disease Society of America, Inc.
EVENT DATE: Nov 06, 2016
Welcome to my fundraising page! I’m beyond thrilled to be able to participate in the NYC Marathon for my biggest passion in life….Huntington’s Disease.
Our journey with HD began in 1997. My Uncle John had always been my #1 fan...bringing me soft pretzels every Saturday and attending every one of my sporting events. He was always a quirky man, but in the nineties, he started acting differently. His appearance started to decline. He was no longer the well put together man that he once was. His anger was fierce…The man could hold a grudge like no other. He was the true definition of a penny pincher. He would walk clear across town to get lunch meat because it was $.50 cheaper per pound. I came home from college to visit in the summer of 1997, and I saw him walking. Of course I stopped to give him a ride. He got in and had tears in his eyes. I had missed our family’s Memorial Day Picnic that May, so I was clueless as to what he was upset about. He told me that he was diagnosed with Huntington’s Disease. Huh!? What was this disease? It turns out that my paternal grandfather had HD, but was never diagnosed with it since he passed away in 1969. Each of his children (six total) had a 50/50 chance of inheriting the disease. My Uncle John fought long and hard, but he passed away in August, 2006.
Fast forward to New Year’s Eve 2002. I received a phone call, my dad’s test results came back…he had Huntington’s Disease. It didn’t really hit me then. I was only 25, had a two year old and thought that the future was so far away. I had a 50/50 chance of inheriting HD. Slowly we started seeing some symptoms in my dad. He lost his job, his driver’s license, his love of life. It was one of the most painful things to watch the strongest man turn into a shell of himself. We went through many rough years as a family, but we are stronger now than ever.
I decided it was time for me to get tested for HD, not only for myself, but for my daughter. On November 9, 2015, I went in for genetic counseling and the blood test. The next few months were stressful, to say the least. I convinced myself, and many others, that I had HD. We finally went in on April 1, 2016 to get my results. I was ready…the neurologist told me the best news that day. I had tested negative. I did not have HD. My daughter had absolutely NO chance of having HD. I was ecstatic and confused at the same time. It was a hurricane of emotions!
My dad just turned 60, he is in a wheelchair and he has been living in a nursing facility for the past three years. He was always active…playing basketball, coaching basketball, running, playing softball, riding bike, etc. He was always trying to get me to run with him when I was younger. I hated it, but later learned to love it. I often wonder what type of man he would be without HD. I know he would still be riding bike and running, but he can’t. He often says how much he misses running. So, I decided that I needed to be a part of the HDSA Team for the NYC Marathon. For him, my sisters, and every other family that is affected by this awful disease.
Any donation is appreciated, and no donation is too small to help find a cure! If you cannot donate, please help by sharing my page. Thank you so very much!
We need a cure!
If you have questions or concerns about the 2016 HDSA NYC Marathon Team please e-mail Mynelly Perez at firstname.lastname@example.org
The Huntington's Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with Huntington’s disease and their families.
HDSA's network of chapters, affiliates, HDSA Centers of Excellence, social workers and support groups provides a seamless connection for help, education and outreach to HD families and health care professionals across the United States.
All funds raised will help support HDSA's Mission of helping those affected by HD and their families.