Three years ago, my life changed forever when I discovered Huntington's Disease runs in my family. This genetic disease is a fatal neurological disorder that is equivalent to having ALS, Parkinson's and Alzheimer's simultaneously.
My grandfather was the first to be diagnosed, then my father, 12-year old-sister, and most recently, myself.
I have watched my father wait for disability for over 2 years while continually being told he is "not sick enough" for help. In this time, he has lost his ability to drive and his brain sits at a 4% processing fee due to his HD. My 12-year-old sister is constantly in pain and suffering. She is in the hospital more than she is home, and she has lost her ability to walk, talk, and even eat on her own. Her days are numbered, and at only 12 years of age, she understands she is dying at the hands of this fatal disease. No person--no child especially--should have to live life feeling as though they do not have a fighting chance.
Rather than be a victim to this disease, I want to fight it. I serve as a voice and an advocate for this monster of a disease and I will do so until the day it is cured. I may have HD, but HD does not have me.
I have began my own non-profit, Champions for HD, to do just that: fight this disease. My goals are to not only provide financial aid to research, but to also help families suffering with this disease with medical and legal expenses that I have witnessed my own family suffer with for years.
Please join me in this fight. I want to give hope to those who feel as though they have lost all hope that is left while fighting this disease.
We are closer to a cure every day due to support like yours.