Summary
-HDSA Berman-Topper Fellows in the News: Drs. Rachel Harding and Adys Mendizabal
- Global Perspectives on HD Headlines: EHDN Newsletter
Publications from HDSA Berman-Topper Fellows
Dr. Rachel Harding received the 2018 Berman-Topper Fellowship for her work on the structure of the huntingtin protein. She is now a Principal Investigator at the Structural Genomics Consortium at the University of Toronto where she leads her own group and continues to study huntingtin and its biological “dance partners.” Rachel recently published her first paper as a group leader. These experiments break down huntingtin into pieces alongside a protein that it commonly sticks to, enabling her team to visualize huntingtin and better understand how it folds. The tools she and her lab has created are available to any HD researcher studying the huntingtin protein, and deeper knowledge of the structure of huntingtin could enable the design of new drugs to slow HD. The paper itself requires some scientific vocabulary, but you can check out the abstract here.
The recipient of the 2021 Berman-Topper Fellowship, Dr. Adys Mendizabal, is an HD researcher, clinician, and epidemiologist studying how people with HD use the healthcare system. She has recently published two papers. The first reviews the reasons that people with HD become hospitalized in different parts of the world and explores their healthcare costs. The second discusses the ethics of clinical trials in rare diseases, with attention to the fact that minoritized populations are underrepresented in HD clinical trials. Adys’s work mines data from the HDSA Centers of Excellence network as well as public and private databases, and is important for advocacy around policies that reduce costs and support better care for people with HD, especially people of color.
Global Perspectives on HD Headlines: EHDN Newsletter
The European Huntington Disease Network (EHDN) is a nonprofit network in Europe whose focus is clinical research in Huntington’s disease and their mission is “advancing research, conducting clinical trials, and improving care for people affected by HD.” They issue a newsletter three times yearly in March, July, and November. This month’s newsletter covers diverse content, including clinical trial updates, the importance of multidisciplinary HD care, a meeting of researchers and clinicians in Paris, and a research initiative related to bongo drumming! Take a look at the July edition here.
