It's that time of year again... My dad and I will be Running to Cure HD in the Rock 'n' Roll Marathon on June 3 to help raise money to cure Huntington's disease, the disease that has stricken my mother Ramona and threatens children like me.
Huntington's disease is a hereditary, degenerative brain disorder for which there is no effective treatment or cure. HD, otherwise known as the "devil of all diseases", is a debilitating disease that combines the worst symptoms of Parkinsons, ALS and Alzheimers. HD slowly diminishes the affected individual's ability to walk, talk, eat and reason. To make matters worse, children of a parent with HD have a 50% chance of inheriting this deadly disease.
Since learning of my mother's illness in 1999, she has moved into a skilled-nursing home where her needs can be met. The disease has taken the majority of her physical and mental capabilities to the point where she can no longer walk, talk, chew or swallow. Fortunately her heart and spirit shine on and continue to inspire me every day.
Since my dad, Bill Johnston, began the Running to Cure HD program in 2001, he and other dedicated runners have gathered more than $600,000 in pledges and matching funds for the Huntington's Disease Society. I was honored to become a part of this tradition in 2009, where my dad and I have since raised nearly $120,000. THANK YOU!
Your support means the world to us. Please consider making a pledge and help us make this the last generation of HD. Your contribution is tax deductible (Tax ID 13-3349872). We will proudly wear your name on our backs and be grateful every step of the way.