OHIO

Mackenzie, Cleveland

I am dedicated to lead by example.  I also am personally motivated to find a cure or treatment because a large part of my family has tested positive for Huntington’s.  I am living with a CAG of 42 and am willing to participate in any trial that helps shed light on this terrible disease.  I am currently in Predict-HD and eager to join Enroll-HD as soon as Predict ends.

 


 

Jan, Red House, WV

I have been a champion for raising awareness of HD within my large extended family for almost 40 years when my aunt was diagnosed.  Initially, I utilized HDSA to provide materials for sharing with my family and in 1995, started a support group because three local families contacted HDSA for a contact while I served as a volunteer contact.  This support group continued for the next 7 years until such time the HD participants could no longer attend.  In late 2012, I began attending a new HD Support Group in Charleston, WV. Becoming a Clinical Trials Diplomat will provide me more opportunities to share information about HD and available clinical trials.  Thus far, I have presented to my local support group and am available to organizations in the tri-state area of WV, Ohio, and Kentucky.  My sister was recently diagnosed which has further ignited my desire to help others affected by HD.