Check out HDSA’s new short video series, “Quick Question,” in which HDSA’s Jennifer Simpson, LCSW (Assistant Director of Youth & Community Services) answers common questions about HD. In less than one minute, Jennifer responds to the questions of “why might a person WANT to test for the HD gene” and “why would a person NOT want to test for the HD gene?”
Do you have more questions about genetic testing or life as an individual affected by rare disease? Global Genes, an organization dedicated to improving the lives of individuals affected by rare diseases around the world, launched a resource hub to connect individuals to resources for navigating their rare disease journeys. Whether you’re contemplating genetic testing, seeking resources to manage emotional health in a rare disease, or want to better understand diversity in the rare disease community, the global genes resource hub has tools to help. Visit the resource library here.
Global Genes also aims to amplify rare disease voices in the medical community. With the goal of creating compassion and awareness for the diverse array of rare diseases that affect individuals and families in the U.S., the RARE Compassion program connects medical students with families affected by rare disease to cultivate meaningful relationships and develop future advocates for the community. To learn more and apply to join the program by February 25, click here.
How does HD affect stress? Researchers need your help to find out!
Researchers at Oregon Health & Sciences University are recruiting people in the Portland area with Parkinson’s Disease and Huntington’s Disease, as well as healthy controls, to join a study evaluating how cortisol levels are affected by neurological disease. Those who partake will collect saliva samples at home for three days, followed by an in-person visit of approximately 30 minutes for mood and quality of life questionnaires. Participants will be compensated for their time. To learn more, view the study flyers for individuals with HD and healthy controls, or contact Angelica Clarke, clarkang@ohsu.edu, 503-220-8262 x 54687.
UVA students take on HD: A toolkit for understanding the disease
Students at UVA collaborated with members of the HD community to develop an “HD Empathy Kit.” This instruction guide is intended to give those who partake a look into what it’s like to live with HD. The tasks involved simulate the symptoms of HD, including movement, speech, and psychological changes, to offer insight into how it feels to experience them, and how they are perceived by others. Learn more about the project and the HD Empathy kit here.
