In 2006 Katie’s husband Mike was diagnosed with Huntington’s disease. In one horrific day their perfect life was changed forever. The doctors prognosis was bleak. They were simply told there was no chance of recovery and no hope for a cure. To make matters worse, this diagnosis left both their children with a 50/50 chance of inheriting the mutated gene which causes Huntington’s Disease.
Katie, however, refused to give up. She began to learn everything she could about the disease. She looked for further resources, and found a new source of hope through CIRM, the stem cell research organization funded by by the 2004 ballot measure Proposition 71. Mike has been involved in five clinical trials and studies. Katie and Mike describe their involvement in these clinical trials as empowering; they are proud to play their part in the search for a cure, and want to deliver a brighter future for their family and every other family devastated by Huntington’s.
As a way to deal with reality, Katie turned to writing and is now and is in the process of publishing her second book. Through her husband’s involvement in these trials, and her courage to share their story, Katie has become a solid rock of hope and advocacy for the entire community of those impacted by Huntington’s disease. As Vice President for Help 4 HD International, a consistent contributor for the Huntington Post, and a stem-cell research advocate for CIRM, Katie provides extensive support for research for this disease.
Huntington’s disease was largely considered incurable some years ago. However, with willing advocates like Katie, willing clinical trial patients like her husband, and with critical research funds delivered by the people of California, this horrible disease may one day be defeated.