#LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD. You can share a video, a photo or a written story to help raise awareness – HD impacts every family differently and it’s time the world knows our story.
All stories are welcome – research included! Maybe you have a story about participating in HD research, or want to share resources to learn about the amazing things that are happening in the field today. Maybe you’re a researcher who wants to talk about the work you’re doing or the things that inspire you to continue.
Post videos, stories, and photos to social media using #LetsTalkAboutHD to educate the world about the devastating impact that HD has on families. Learn more.
Roche GENERATION-HD1 Study has Fully Recruited
GENERATION-HD1 is a large study testing whether a drug called tominersen (previously RG6042) could help to slow or stop the progression of HD symptoms. The trial is being carried out by a company called Roche, known as Genentech in the United States. This week Roche/Genentech issued a letter to the HD community to share the news that their worldwide study has fully recruited, with 791 participants across 18 countries. As for when we can expect to know the results of the study: “After all the study participants have completed their 25-month trial period, researchers will analyze the overall study data, which we expect sometime in 2022.” The community statement goes into more depth and answers many common questions about the trial.
HDBuzz: COVID-19 and HD
In addition to HDSA’s resources for families coping with the effects of the COVID-19 pandemic, check out this article from our friends at HDBuzz. Dr. Rachel Harding, HDSA Berman-Topper Fellow, discusses how the HD research community is continuing their work despite the quarantine, and what it means for HD clinical trials (they’re moving forward as safely as possible).
