55 years ago, Marjorie Guthrie sought out volunteers from across the country and created the first network of support for the HD community. Each year on September 18th, HDSA honors our founder, Marjorie Guthrie, and those five volunteers that stood shoulder to shoulder with her to create what is now the Huntington’s Disease Society of America. Join us in honoring Marjorie’s vision to “…do the work that must be done” by donating today in support of Marjorie’s strength and inspiration! Click here to learn more.
The Power of Medical Records in HD Research: Research Webinar September 21
If you have been diagnosed with Huntington’s disease, or are a caregiver and are looking to help accelerate HD research while also simplifying your life with a free digital medical record tool, join us on Wednesday, September 21st for HDSA’s next research webinar, “The Power of Medical Records in HD Research with PicnicHealth & Sage Therapeutics.” During the presentation, representatives from PicnicHealth and Sage Therapeutics will talk about how contributing de-identified medical records can advance HD research, and how PicnicHealth’s innovative service and technology can help support you or your loved ones’ medical care. Sign up for the webinar here.
Lauren Byrne and Rebecca Mason talk JOIN-HD on Help4HD
HD is a rare disease, but an even smaller number of individuals are affected by Juvenile Huntington’s disease (JHD). A person is usually considered to have JHD if their HD symptoms onset before age 21. While symptoms resemble adult-onset HD, JHD has some unique characteristics that may not be as well understood by clinicians and researchers. JOIN-HD is a global registry for families affected by Juvenile Huntington’s disease (JHD). Open to individuals with JHD and their caregivers, this registry aims to strengthen the knowledge base we have on JHD to speed up research and support development of future JHD clinical trials. Expert HD researchers, Drs. Lauren Byrne and Rebecca Mason, appeared last week on the Help4HD podcast to discuss the nuances of JHD, the importance of the JOIN-HD initiative, and how to get involved. To learn more about JOIN-HD, click here. To listen to the full episode, click here.
Participate in HD Research: Motivations for Genetic Testing Survey
Researchers at the University of Pennsylvania are conducting a study to learn about what people consider when deciding whether or not to learn their genetic status, especially as it applies to potential clinical trial participation. The results of this study will inform clinical trial construction and the education and counseling needed for potential participants. Individuals 18 years and older who are able to read English are invited to participate. To participate in this survey, you must be a blood relative of someone who has Huntington’s disease, but not showing symptoms yourself. This means you can either have tested negative, tested positive but are pre-symptomatic, be at-risk and considering genetic testing, or be at-risk for the disease and decided not to undergo genetic testing. To participate in the survey, click here.
