On Thursday, March 26th, something inspiring and effective happened. A group of advocates, all touched in significant ways by HD, made a trip to Capitol Hill to share their personal stories with their Representatives and ask for their co-sponsorship of H.R. 678, the Huntington's Disease Parity Act of 2009.
Mothers, husbands, brothers, caregivers, at-risk, gene positive - this group came together from districts across Virginia to educate Congress about HD and why this bill is so important to families across the country just like theirs who are struggling to obtain benefits at a time when they need them the most.
The group, led by Tim O'Neil, M.D. conducted 10 office visits throughout the day which we already believe will result in at least an additional 3 co-sponsorships. HDSA would like to personally thank the following advocates for taking the time to share a part of their lives with their elected officials, to educate them about the HD community and what life living with this disease is like, and for bringing us all one step closer to seeing this very much needed change realized.
