We talk a lot about what we’re hopeful for tomorrow here in the research world, and it’s equally important to talk about what HD families need help with TODAY. To that end, there is a piece of legislation that ourselves, our friends and our allies need to rally behind to help pass. The Huntington’s Disease Parity Act is a bill that will help fill some of the gaps in care our loved one’s experience. HR 2050/S 868, the Huntington’s Disease Parity Act, will eliminate the 2-year benefit wait period for Medicare for folks with HD who qualify for SSDI. It will also waive the 5-month benefit wait period, meaning that as soon as you qualify for SSDI, no matter how long you’ve been waiting for your application to be approved, all your benefits will kick in immediately. But, in order to pass a bill like this we need the community as a whole to stand up and say “I want to see this bill passed! This matters to me!” Start with sending a message to your Member of Congress today to let them know that passing the HD Parity Act matters to you! Check out HDSA’s Action Center to learn more about how to get involved, or join us TODAY at 2 PM EST for an HDSA & Me webinar with HDSA’s resident advocacy expert, Jennifer Simpson, Assistant Director, Youth & Community Services. Register to join the webinar here.
Tocris Bioscience on Somatic Instability and HD
Somatic Instability, DNA damage, mismatch repair, and many others are all terms that we hear frequently when we discuss HD but almost never in the other facets of our daily lives. If you’re looking to brush up on your HD-specific vocabulary and get up-to-date on research strategies to target the disease, check out the latest blog post from Tocris Bioscience, a life science reagent supply company, on somatic instability in HD. Access the full post here.
Preventing HD with Observational Research Participation
In a column for Huntington’s Disease News, community advocate B.J. Viau recounts his experience participating in observational trials for HD. The most recent study joined, PREVENT-HD, focuses on ways to assess HD progression before symptoms present to hopefully prevent them from ever occurring. To learn more about the PREVENT-HD study and the importance of participation in HD Research, check out the recording of HDSA’s most recent research webinar on with the study’s director, Dr. Jane Paulsen. To find out more about how to participate in PREVENT-HD and other studies, visit HDTrialfinder.org.
