This coming Tuesday, September 8th, at 12 PM Eastern, Dr. Ed Wild and Dr. Jeff Carroll, creators of HDBuzz, as well as HDBuzz writers Dr. Sarah Hernandez and Dr. Rachel Harding, will answer questions about HD research LIVE during HDSA’s Ask the Scientist Anything research webinar.
That’s Noon ET, Tuesday, September 8th. Register here!
Here’s the Deal: Talking to Kids About HD
Hosted by HDSA’s Jennifer Simpson, Assistant Director of Youth and Community Services, HDSA’s conversation series Here’s the Deal tackles important topics to help you navigate through your HD journey. Episodes air on HDSA’s YouTube channel and include discussions about isolation, testing, relationships, family planning, and much more.
The most recent episode features Dr. Kelsey Finn, a geneticist and bioethicist with a PhD in Human Genetics from Johns Hopkins University. The main focus of her work is figuring out ways to talk with children and young adults about genetic diseases and health information. If you’re a long time reader of this blog, you may even have participated in a survey or interview study conducted by Kelsey. Her findings are helping to provide real-world evidence supporting meaningful ways to engage with kids and adolescents about HD. You can watch her virtual conversation with Jennifer to find great tips for talking with the whole family about HD, and check out her book about explaining HD to young children.
Survey: HD and Reproductive Decisions
Researchers at the Johns Hopkins Bloomberg School of Public Health and the National Human Genome Research Institute are conducting a survey study to learn more about the experiences of individuals at risk for adult onset, neurological conditions and their opinions on various reproductive options. The information you provide may help to improve our understanding of how experience with HD might affect a person’s perspective on the reproductive options that are available.
The study involves filling out a 20-30 minute online survey. Participants will receive a $10 Amazon gift card as a token of appreciation. You may participate if you are 18 years or older, and you or a close family member of yours has been diagnosed with HD or tested positive for the HD gene. You can read more about this study on HDSA’s HD research surveys page, or go directly to the survey here.