HDSA’s PGD-IVF survey is closing on September 20th – please add your voice so that we can best serve the community around this issue! HDSA is committed to providing individuals and families impacted by HD with the resources they need to make informed choices. As part of this mission, HDSA wants to know how HD families feel about different family planning options that can make sure HD is not passed on to future generations. Technologies like Preimplantation Genetic Diagnosis In-Vitro Fertilization (PGD-IVF) currently exist to help families to ensure that the gene expansion that causes HD is not passed on to their children. Unfortunately, there are still significant barriers to accessing this technology.

HDSA wants to hear from individuals with HD, at-risk for HD and their partners about their experiences with and thoughts about PGD-IVF, including barriers folks have faced trying to access PGD-IVF. Whether you’ve undergone PGD-IVF, considered PGD-IVF, or are just weighing out all your options, we want to hear from you. Click here to take a 5-10 minute anonymous survey to help HDSA better understand the experiences and thoughts of the HD community on the issue of PGD-IVF.

This Week in HD History: Animal Models of HD

Even before the discovery of the gene in 1993, researchers were determined to come up with ways to study Huntington’s disease in the living brain. Before it was possible to create and study mice that had the HD mutation, scientists understood that people with HD had a very particular kind of damage to the brain. The area known as the striatum is responsible for movement, motivation, and mood, and in HD, these cells begin to get sick and disappear. In 1976, researchers were able to recreate this type of damage in a mouse and observe “symptoms” that appeared similar to Huntington’s disease. This type of modeling was used for almost two decades, until the first genetic mouse models were created in the mid 1990s. Today there are many different animal models used to study HD, from worms, flies, and slime mold, to rodents, sheep, pigs, and primates. We owe a great debt of gratitude to these animals for the research progress of today. Through studies like Enroll-HD, more and more HD scientists are able to turn to human data to make new observations and confirm discoveries made in animals. 

HDSA Research Fellows Share Their Progress

HDSA’s Berman-Topper family research fellowship provides three years of funding for young researchers who are devoting their careers to studying Huntington’s disease. These fellows report quarterly on their progress, and some go above and beyond even that.  Dr. Rachel Harding, HDSA’s 2018 Berman-Topper Fellow, blogs about her research progress in real time on her blog, Lab Scribbles. Recent posts discuss her summer travels, including HDSA’s 2019 Convention in Boston, and her work on purifying the huntingtin protein to be used in many collaborative research experiments.