Huntington’s Disease is a degenerative brain disease that strikes in mid-life, usually between the ages of 30-40. People lose their ability to walk, talk, and even feed themselves. Even though people may live for 10-20 years with this disease, their quality of life is taken from them. Scientists are still uncertain as to why the protein in our brains becomes toxic and kills our brain cells.
My biggest fear is not being there to take care of my family: Bob, Katie and Ryan. Our daughter was born with Cri-du-Chat Syndrome and will always live at home, requiring our care. It makes me so sad to not be there for her and Ryan. It makes tears spring to my eyes when I think of missing my children’s graduations, weddings, or even being a Grandma myself. It is my constant prayer that HD won’t be passed down to them. Together, I believe we can make this the last generation with Huntington’s Disease. I certainly want my own children to have “hope for their future” if they choose someday to have the blood test. Since I received my diagnosis in January 1999, I have always wanted to put together a fundraiser to try to raise awareness and money for research. Back then, I wasn’t ready to share my story and you can’t put together a successful fundraiser if you don’t share your story. For me, this is the year, to gather our family and friends together and share our journey.
We would be honored to have you attend The Bev Hartig Huntington’s Disease Foundation fund raising event in April of each year to Educate-Fund-Believe.
With Sincere Gratitude,