Summary
- Leaving a Legacy: National Make a Will Month & Brain Donation Research Webinar
- HD Community Advocate Shares Her Story
- HSG Announces Positive Topline Results for vUHRDS
Leaving a Legacy: National Make a Will Month & Brain Donation Research Webinar
August is National Make-a-Will month, a reminder of the importance of estate planning to make sure your wishes are honored, and your family is protected. HDSA’s disability expert, Allison Bartlett, Esq, highlighted the importance of making a will and steps to prepare one in her weekly disability tips blog—read more here.
Brain donation is an important option to consider when thinking about your legacy, too. A brain donation is an invaluable gift that makes a lasting scientific impact for generations to come, and is essential to enhance our understanding of HD. Registering to donate is non-binding, and can help family members prepare. Read more about brain donation on HDSA’s website and join HDSA next week at 12PM ET on August 23rd for a research webinar exploring brain donation from multiple angles. Click here to register.
HD Community Advocate Shares Her Story
It’s important that those researching treatments for HD continue to recognize the HD family members who are at the heart of their efforts. uniQure has set out to highlight the community stories that motivate their work to cure HD. Ashely Clarke, an HD advocate based in Northern Ireland, shares her experience caring for a parent with HD, and discusses the urgent need for treatments. Learn about Ashely’s story here, and her advocacy efforts here.
HSG Announces Positive Topline Results for vUHRDS
This week, the Huntington’s Study Group (HSG) Announced positive topline results for a study of the reliability of the vUHDRS, or the virtual Unified Huntington’s Disease Rating Scale (UHDRS). The UHDRS was developed for clinical research studies to measure changes in movement, thinking, and daily functionin people with HD. The vUHDRS measures the same changes, but it could be administered virtually. These results may support the development of remote or hybrid clinical trials, which could make it easier for more people to participate in clinical research. To read the full press release, click here.
