As November chill slowly turns to December cold, mark your calendars for HDSA’s final research webinar of the year on Tuesday, December 7th. Three editors of HD Buzz, Drs. Jeff Carroll, Ed Wild, and Rachel Harding, will join us for an “Ask the Scientists…Anything” session to discuss all of the peaks and valleys of the HD research landscape and provide insights on what’s on the horizon for 2022. Register to join here.
Legislators call for passage of HD Parity Act
Yesterday, an Op-Ed published in Roll Call by Sen. Kirsten Gillibrand, Sen. Bill Cassidy, Rep. Bill Pascrell Jr., and Rep. Adam Kinzinger rallied legislators to support the HD Parity Act, also known as the Huntington’s Disease Disability Insurance Access Act. This piece of legislation that was introduced to Congress 13 years ago will remove waiting periods for individuals affected by HD to access Medicare and SSDI benefits. Families affected by HD already face immense challenges as they navigate this generational disease; the HD Parity Act will allow people affected by HD to access the support they need, when they need it most. To join the cause and learn more about how you can help pass the HD Parity Act, visit hdsa.org/takeaction.
HD Research: What does it mean to participate?
Research studies and research participants are critical for the HD community to forge onward in its mission for treatments and cures for HD. But what does it mean to join a study? In a recent Help4HD podcast episode, Lauren Holder chronicled her experience participating in the PREVENT-HD observational study and interviewed research coordinators to clear up common research questions and learn more about their passion for the field. To listen to the full recording, click here. To learn more about how you can get involved in PREVENT-HD and other research studies, visit HDTrialfinder.org.