The 2022 HDSA Berman-Topper Family HD Career Development Fellowship has been awarded to Dr. Sara Sameni (Salk Institute for Biological Sciences). These prestigious fellowships, made possible in part by the generosity of the Berman and Topper families, provide up to $80,000 of funding per year for three years to young scientists and clinicians who desire to make Huntington’s disease (HD) part of their long-term career plan. Dr. Sameni’s project will take a new approach to HD biomarkers, combining her expertise in biomedical engineering and mathematics with cell and imaging data. This will allow her to create personalized models to predict disease course and treatment response in people with HD.
Jennifer Simpson talks HD Parity Act with Huntington’s Disease News
HDSA’s assistant director of youth and community services and resident advocacy expert, Jennifer Simpson, LCSW, was recently interviewed by Huntington’s Disease News journalist, Carlos Briceño, about HDSA’s efforts towards passing the HD Parity Act. This critical piece of legislation would waive the current two-year wait period for individuals with HD on SSDI to access Medicare benefits, and would waive the additional 5-month waiting period for people with HD to access SSDI benefits. To read the full interview, click here. To learn more about how you can help pass the HD Parity Act, visit HDSA’s action center.
Participate in research from home with online Motivations for Genetic Testing study
Researchers at the University of Pennsylvania are conducting a study to learn about what people consider when deciding whether or not to learn their genetic status, especially as it applies to potential clinical trial participation. The results of this study will inform clinical trial construction and the education and counseling needed for potential participants. Individuals 18 years and older who are able to read English are invited to participate. To participate in this survey, you must be a blood relative of someone who has Huntington’s disease, but not showing symptoms yourself. This means you can either have tested negative, tested positive but are presymptomatic, be at-risk and considering genetic testing, or be at-risk for the disease and decided not to undergo genetic testing. To participate in the survey, click here.
