HDSA works with students and researchers to review HD research surveys and make them available on our survey page. Participating in a survey is a great way to contribute to HD research from the comfort of your home or on the go. 

This week is your last chance to take part in in a short confidential research survey on HD and romantic relationships. If you are over 18 and Huntington’s disease has affected the way you approach dating, relationships, and/or family planning, consider participating. Researchers at the University of California, Irvine are conducting a study exploring the process of disclosing a diagnosis or family history to a romantic partner and which factors couples consider for reproductive decisions. The information gathered from this study can give healthcare professionals, such as genetic counselors, deeper insight into this important aspect of life for the Huntington’s disease community. Please visit this link to participate: https://is.gd/HDsurvey 

To be eligible for this survey you must be at least 18 years old and:  

  • At risk for Huntington’s disease OR 
  • Diagnosed with Huntington’s disease OR 
  • The romantic partner of someone who is at risk for Huntington’s disease OR 
  • The romantic partner of someone with Huntington’s disease 

Please feel free to contact researcher Marian Tsang with any questions or concerns at (714) 456-5837 or mjtsang@uci.edu  

HDBuzz on “Brain Organoids” 

Our friends at HDBuzz published a story this week covering recent research on brain development in HD. The study made use of models called “brain organoids,” a method of growing cells into 3D structures that resemble a tiny brain in early stages of development. It’s not a “thinking” brain but it’s one approach to studying changes in development that occur when a person has the HD gene. HDSA Berman-Topper Fellow Sarah Hernandez wrote this article for HDBuzz and did a great job describing the findings and the caveats of the work.   

HD Insights Podcast  

Hosted by the Huntington Study Group (HSG), the HD Insights Podcast is “a long-form interview format in which the Huntington Study Group speaks with researchers in Huntington disease and those helping shape the future of HD treatments.” This week’s podcast is an interview with the chair of the HSG and NYU Professor of Neurology, Dr. Andrew Feigin. Dr. Feigin has been involved in HD research for many years, from the Venezuela research project that originally identified the HD gene, to his current role as the principal investigator of the Vaccinex SIGNAL trial. He speaks about the path that led him to working in the HD field and his experience in Venezuela, and reflects on variability of HD symptoms and how this may affect clinical trials for HD. He also talks about providing multidisciplinary HD care and research opportunities, and his history at HSG.