A Conversation With a Huntington’s Advocate About the HD Parity Act

My wife, Jill, has known of Jennifer Simpson, the assistant director of youth and community services at the Huntington’s Disease Society of America, for several months now. Jill first saw her in several YouTube videos on topics related to Huntington’s disease (HD) and was then part of…

Fair and Unbiased Courts Help Protect Disability Rights

My wife, Jill, works from home doing freelance jobs. Because she works remotely, she can watch television during the day from the comfort of our living room. The recent confirmation hearings in the U.S. Senate for Supreme Court nominee Judge Ketanji Brown Jackson kept Jill transfixed as she pondered…

Advocates Lobby US Congress During Virtual Rare Disease Week

More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…