HDSA’s 2020 Convention has gone virtual, and participation is free – though registration for some of the sessions is required due to limited space. Virtual Convention is taking place from June 4th – 7th, and traditionally, the Saturday of Convention (June 6th) is devoted to a research forum. Although we can’t be in one location in person this year, we’ve planned the same great scientific programming, designed to convey the latest news in HD research. For the full schedule, we highly recommend checking out the convention page on the HDSA website, and downloading the Convention app. Here is our research forum line-up: 

Saturday, June 6th  (all sessions in Eastern time)

  • 10:00 – 10:45 AM: Pre-recorded webinar from Annexon Biosciences 
  • 11:00 – 11:15 AM: Welcome from Dr. George Yohrling 
  • 11:15 – 11:45 AM: Wave Life Sciences 
  • 12:15 – 12:45 PM: Roche/Genentech 
  • 1:00 – 2:00 PM: HD Buzz Year in Review 
  • 2:30 – 3:30 PM: Clinical Trials Showcase 

Additional research sessions on June 4th – 7th will include live Q&As with Ed and Jeff from HDBuzz, HD researchers from HD families, and pharma and biotech companies speaking about HD therapies in development. Please register to check out these exciting presentations from leaders in the field! 

Survey: Impact of COVID-19 on Rare Disease Communities 

The Rare Diseases Clinical Research Network (RDCRN) is an American research consortium supported by the National Institutes of Health (NIH) that collaborates to better understand various rare diseases and how best to treat and care for patients in these communities. The NIH announced recently that the RDCRN has developed a survey to find out how COVID-19 is impacting rare disease communities. You can participate here to add HD community voices and help shape our government’s understanding of how this crisis is affecting our HD family.    

HD Insights: Spring Edition 

HD Insights is a publication from the Huntington Study Group (HSG) that highlights current HD research. Edited by Dr. Daniel Claassen, who also directs the HDSA Center of Excellence at Vanderbilt University, HD Insights comes out twice yearly. It contains thoughtful articles that provide information about the latest scientific findings and the people shaping HD research and clinical care today. The Spring 2020 Issue is available now, with articles on AAV gene therapy (like the HD trial being conducted by uniQure), trial recruitment, and family resilience. 

On a more frequent basis, HSG also issues the HD Insights Podcast. This week’s interview is with Dr. Lauren Byrne, a postdoctoral researcher in the laboratory of Dr. Ed Wild at University College London, and a recipient of the 2019 HDSA Berman-Topper HD Career Development Fellowship. Lauren speaks about growing up in Northern Ireland in a family affected by HD, and how it led her to pursue HD science and finally to obtain her PhD in a prominent HD laboratory in early 2020. She also describes her research on biomarkers, especially the HDClarity spinal fluid collection study, and how it could help with speeding HD clinical trials and developing more accurate diagnostics. You can listen to the podcast or read a transcript of it here.