We’d like to extend a huge thanks to all of those who participated in HDSA’s Virtual Convention from June 4th – June 7th. Despite our inability to meet in New Orleans this year, the enthusiasm from the community and the high level of engagement was inspiring. On the science front, hundreds of participants attended sessions highlighting HD research from around the globe and visited with representatives from organizations doing HD research. You posed insightful questions to better understand the implications of basic and clinical studies, spoke about your experiences with research, and provided feedback to the companies and clinicians who need to hear HD family voices. Our largest research session (HDBuzz Year in Review) had more than 650 live attendees, and the enthusiasm of participants around the country and the world is leading HDSA to think hard about how we can extend the Convention experience virtually during future live events. Check out HDSA’s press release sharing more about the Convention experience and the numbers.
If you weren’t able to attend, would like to share a session with someone you know, or want to re-watch a talk, every Convention video will be available on June 15th, and we’ll be covering the research highlights here soon.
Compensated Phone Interview Study
Feeling energized following Convention and want to make your HD experiences heard? Our partners at Sage Therapeutics are launching a compensated phone interview study to better understand the impact of early Huntington’s disease symptoms on your life. Sage is in the early stages of developing HD therapeutics aimed specifically at the changes in thinking caused by HD. For details of the study and how to get involved, click here.
HD Insights Podcast
The Huntington Study Group created the HD Insights Podcast to highlight engaging conversations with leaders in HD research and medicine. Two recent episodes are guest hosted by Dr. Dan Claassen, chief editor of the HD Insights magazine and director of the HDSA Center of Excellence at Vanderbilt University.
As described by HSG:
“On this special episode of the HD Insights Podcast, Dr. Daniel Claassen serves as guest host in speaking with Dr. Ira Shoulson about his perspectives from the research project in Venezuela in the early 1990s that ultimately led to the discovery of the HD gene. He shares fond memories of what it was like to be part of that project led by Dr. Nancy Wexler. Dr. Shoulson has had a prominent role in HD research throughout the years. He is a co-founder of the Huntington Study Group, and was part of the team that developed the Unified Huntington’s Disease Ratings Scale, or UHDRS. This is also the first episode among others planned that takes a deeper dive into some of the disparities that impact access to quality HD care. In this instance, for the people in this area of Venezuela, the geographic and severe socio economic disparities that isolated them from the rest of the country.
On this second episode in a special series of the HD Insights Podcast, Dr. Daniel Claassen [speaks] with Dr. Leon Dure about his perspectives participating as a pediatric neurologist on the research project in Venezuela in the early 1990s with Dr. Nancy Wexler’s team. Dr. Dure is Professor and Director of the Division of Pediatric Neurology and William Bew White, Jr. Chair in Pediatric Neurology at the University of Alabama at Birmingham (UAB). As a pediatric neurologist, Dr. Dure brings a slightly different perspective on the Venezuela experience. Additionally, he and Dr. Claassen have a more in-depth conversation about the clinical impacts of HD on young people.”