Summary
- HDSA & HSC Research Webinar TOMORROW
- #LetsTalkAboutHD in HD Awareness Month
- Research Participation as a Young Person: Check out the NYA Research Page!
HDSA & HSC Research Webinar TOMORROW
Tomorrow at 1PM ET, HDSA and the Huntington’s Society of Canada (HSC) will co-host an HD research webinar in which Dr. Michael Hayden, MBChB, Chief Executive Officer of Prilenia, will discuss top-line results from the PROOF-HD trial and answer community questions alongside a clinical leader of the study. Register to join here.
The HDBuzz team referred to this clinical trial update and many others from pharmaceutical companies in their Day 3 coverage of the recent CHDI conference in Dubrovnik, Croatia.
Happy HD Awareness Month!
May is Huntington’s Disease Awareness Month, and we need your help to turn up the volume on HD awareness! #LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD…It can be a video, a photo or a written story – HD impacts every family differently and it’s time the world knows our story. All stories are welcome – research included! Together we can spread awareness about Huntington’s disease. Learn more here.
Research Participation as a Young Person: Check out the NYA Research Page!
Studies of drugs to treat Huntington’s disease have been primarily focused on adults, but the ultimate goal is to treat or even prevent HD symptoms in everyone who carries the gene. For trials and treatments to occur earlier and in younger people, it is essential that researchers gain a better understanding of the developing brain in people at risk for HD, and this is where youth from HD families can have a big impact.
Although HD drug trials are rarely open to anyone under the age of 25, there are several ways that young folks can get involved in HD research. Participation in observational studies can help us improve our understanding of the earliest phases of HD, sharing your perspectives in HDSA-vetted online surveys can inform best practices in HD care, and engaging in research early and spreading accurate scientific news is a form of advocacy, as is supporting loved ones who may be interested in participating in trials. To learn more about how you can get involved, click here.
