Nancy H, Nashville, Tennessee
My husband is finishing the CREST-E study and we both participate in Enroll-HD. I believe clinical trials are vital to our quest for a cure or new effective treatments for HD. I am a Clinical Trials Diplomat because I want to help others understand both the importance of clinical trials and the ease of participating in clinical trials. I have spoken to the Middle Tennessee and Louisville, Kentucky, support groups about clinical trials and would be happy to speak to groups in Tennessee, Kentucky, Alabama, Mississippi, Georgia, North Carolina, and Virginia.
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.