The month of March is a time to celebrate and appreciate social workers for all they do! Social workers help people in all stages of life; they’re educators, crisis responders, advocates, community leaders, and more. In the HD community specifically, social workers provide invaluable support to HD families by running support groups, organizing care, connecting individuals with resources, providing one-on-one counseling, and more. To get connected with HDSA’s network of social workers specialized in HD care, click here. HDSA also has youth social workers who are dedicated specifically to supporting young people affected by HD; to learn more and get connected, click here. Want to know more about what social workers do? Check out Help4HD’s recent podcast with Dr. Bonnie Hennig-Trestman, DSW, commemorating World Social Work Day here.
uniQure completes enrollment of second cohort in study of AMT-130
Earlier this week, uniQure announced they had completed enrollment of the second participant cohort in the Phase I/II study of AMT-130, the first gene therapy being investigated for HD. Thus far, 19 participants have received the surgery with no major safety concerns. uniQure expects to present a clinical update in the second quarter of this year with safety and efficacy data from the first 10 participants in the study. The company also plans to open a third US cohort for enrollment in the near future. To read the full press release, click here.
Quick Question: How do I get involved in HD Research?
Great question! There are dozens of studies and surveys recruiting participants to partake in HD research and many ways you can get connected. Whether you have HD, are at-risk for inheriting the gene, are HD-negative, or you’re a caregiver to a loved one with HD, there are plenty of ways to get involved. To hear HDSA’s staff scientist, Dr. Leora Fox, talk through the possibilities, check out HDSA’s quick question series on YouTube.