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 Allowances List. These successes would not have been possible without the continued involvement of dedicated individuals in the HD community.

In 2013, HDSA shared the stories of HDSA Advocates, in the words of HDSA advocates. 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.