In a community letter released January 18th, Roche announced plans to continue developing the huntingtin-lowering drug tominersen. After analyzing data collected in the Phase III GENERATION HD-1 trial that halted dosing in March of 2021, it was determined that younger adult participants with lower disease burden may have benefitted from less frequent dosing of tominersen. For this reason, Roche is planning a new Phase II clinical trial of tominersen in this population. To read the full announcement from Roche, click here 

HDSA will be joined by members of the Roche team at 3:00 PM EST TODAY, January 20th, for an update on the data from the GENERATION HD-1 study that led to this decision and further discussion of this news. This 90-minute, community-focused webinar will be an opportunity to hear members of the Roche/Genentech team discuss the new data, ask questions, and participate in a conversation with Roche & HDSA leadership. Register for the webinar here. 

An Advocate’s Perspective: Gene Veritas on Roche News  

Esteemed community advocate Kenneth Serbin, also known as Gene Veritas, published a blog post that further analyzed Roche’s Tuesday letter. To read his breakdown of the announcement with perspectives of different professionals in the field, click here 

Boston Area: Neural Networks Research Opportunity 

Are you located in the Boston area and interested in participating in research that could change how we understand Huntington’s disease (HD)? In an effort to better differences between brain networks of HD-positive individuals prior to onset of symptoms and control subjects without the mutation, researchers at Beth Israel Deaconess Medical Center, in partnership with Harvard University’s Center for Brain Science, have launched a new study to visualize brain networks. Functional magnetic resonance imaging (fMRI) will be used to look at changes in blood flow to areas of the brain in both HD positive individuals and healthy controls ages 18-65. The study involves 3 MRI visits over 18 months, and subjects will be compensated for their participation. If you’re interested in learning more, check out the study flyers for HD-positive individuals and healthy controls, or contact for more information. 

This study and others like it for individuals across the country interested in participating in HD research can be found at