Summary
- HDBuzz: “How many is too many?” New research on CAGs
- The HDSA Podcast is back! HD science in the spotlight
- Online Surveys: Participate in HD Research from home!
HDBuzz: “How many is too many?” New research on CAGs
HD is caused by an expansion of C-A-Gs in the huntingtin gene which tends to grow over time. Some scientists believe that if this expansion can be slowed or stopped completely to prevent those CAG repeats from expanding to a length that poses harm to cells, it may delay or prevent HD symptoms from ever occurring. Researchers from the Lab of Dr. Gill Bates, an expert HD scientist based in London, have done extensive work studying HD mice to investigate whether there is a threshold of CAG repeats that leads to symptoms of HD. Their findings were published in February, and last week the HDBuzz team summarized the major takeaways here.
The HDSA Podcast is back! HD science in the spotlight
The HDSA Podcast is back! Keep up with all things HDSA with the relaunch of “The HDSA Podcast.” Monthly episodes hosted by HDSA President & CEO, Louise Vetter, will give listeners an opportunity to meet members of the HD community, get a behind-the-scenes look at the Huntington’s Disease Society of America. This month, Louise was joined by HDSA’s Assistant Director of Research and Patient Engagement, Dr. Leora Fox, and Manager of Mission Grant Programs, Kelly Andrew, to discuss HDSA’s research programs and the HD research landscape. Listen to the full episode here.
Online Surveys: Participate in HD Research from home!
Online surveys are a great way to make your voice heard and contribute to HD research from wherever you have access to the internet. Whether you are a person with HD, caring for a loved one with HD, at–risk for HD, or someone who is part of an HD family, there are researchers who value your experiences and want your feedback. You can view all available opportunities at https://hdsa.org/hd-research/online-surveys/.
A newer addition to this list is The Patient Supported Approaches to Gene Editing (PaSAGE) Study—an NIH-funded study about views, ethical concerns, and clinical aspirations on prenatal gene editing technologies. This is a group of social scientists and bioethicists studying the possible impact on families and communities of genetic therapies that might become available in the future. They are interested in connecting with people from HD families in the USA who have lived experience with HD, whether as a patient, caregiver or loved one.
Participation in this interview study involves a one-hour phone call with someone from the research team at the Mayo clinic. If you have a family history of HD, they would like to know your thoughts. No matter how you feel about potential treatments, they are interested in hearing from you. If you would like to take part in this interview study, please email pasagestudy@mayo.edu.
