Neurocrine on INGREZZA, HD-CHARGE, HDBuzz on family planning

Neurocrine discusses INGREZZA with HDSA 

Last month, HDSA hosted a research webinar with Neurocrine Biosciences, Inc. to discuss INGREZZA, their new medication recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of chorea associated with HD in adults, and to address questions from the community. You can now view the recorded webinar on HDSA’s YouTube page by clicking here.  

Jamie Hamilton discusses costs of HD with Lauren Holder 

This week on the Help 4 HD Podcast, Jamie Hamilton from CHDI spoke with Lauren Holder about a study that is helping to determine the cost of HD. There are ways of tracking direct costs, such as information about medical appointments, medications, and insurance coverage. However, it is much more difficult to document the indirect costs – transportation to care appointments, drug costs that aren’t covered, not to mention the economic impacts of changes in mental health for both patients and caregivers. CHDI’s HD-CHARGE study is attempting to do this by having HD family members respond to a series of questions about how their lives and home economics are affected by HD. To learn more about the study and its goals, listen to the full episode here.  

HDBuzz on Fertility Technology and Decision-Making  

Our friends at HDBuzz have been sharing HD research news in plain language for more than a decade. This sometimes means that HD research or care practices have advanced since a piece was originally published! This week, Dr. Ed Wild has updated a “classic” HDBuzz article that talks about reproductive technologies, decision-making around family planning, and how science can help gene carriers or those at risk to have HD-free kids. Check it out here. If you or someone you know is facing these decisions, HDSA has resources related to genetic testing and family planning, as well as a Help Line to aid you in finding the information and support you need.