Living With HD
HDSA Advocates in Action: Voices of HD
It is because of our advocates that HDSA has been able to successfully advance legislation and policy to improve the lives of HD families, including passage of GINA, the Genetic Information Nondiscrimination Act, and, more recently, having Adult onset HD and Juvenile Onset HD be added to the Social Security Administration’s Compassionate Allowance List. These successes would not have been possible without the continued involvement of dedicated individuals in the HD community.
In sharing the stories of HDSA Advocates, in the words of HDSA advocates, we hope to inspire action. Advocacy is education, and the more that people know how easy it is to be involved, the more we can accomplish together.
This section will feature a profile of one advocate each month. These profiles will also be posted on the Advocacy Facebook Page, and in HDSA Advocacy Alerts. Amplify our collective voice by sharing these stories with your family, friends, and colleagues, or by suggesting an individual to be profiled.
Are you a voice of HD? HDSA wants to hear from you! Contact Jane Kogan at jkogan@hdsa.org to be profiled, or to suggest an individual to be featured in this section.