Join us virtually from June 10th-13th for the 36th Annual HDSA Convention, beginning one week from today. Register for free on HDSA’s website to participate in conversations with clinicians, community members, and researchers on all things HD. Research talks will include showcases of ongoing clinical trials, HD therapies in the pipeline, updates on findings from recent clinical trials, an open Q&A with HDBuzz editors Drs. Ed Wild, Jeff Carroll, and Rachel Harding, and lots more.
Voice of the Rare Carrier: Virtual workshop series for carriers and individuals at-risk of rare genetic diseases
Join ANGEL AID for a virtual workshop series catered to carriers of rare diseases, Tuesdays from 5-6:30 PM PST//8-9:30 PM EST, June 21-June 27. For six weeks, participants will be guided through a series of thoughtful prompts that will focus on topics like guilt, dating, genetic testing, family planning, identity, and more as a Rare Carrier. The workshop will be led by Dr. Chelsey Hauge, an expert in social-emotional learning, and Kate Milliken, a master storyteller. Confirmed carriers as well as those at risk of inheriting a genetic disease are invited to apply; the group will be limited to 25 participants, and applications are due by June 15, 2021. Apply here today!
HD Insights Podcast with Clinical Social Worker Amy Chesire
HSG’s Kevin Gregory was recently joined by Amy Chesire, Clinical Researcher and Clinical Social Worker at the HDSA Center of Excellence at the University of Rochester, and Greg Suter, Executive Director of the Hereditary Neurological Disease Center in Wichita, Kansas, joined Kevin Gregory from HSG for a discussion an episode of HSG’s HD Insights podcast. Amy and Greg, both veterans in the field of HD clinical research trials, discussed research challenges brought on by COVID-19, their experiences on the job, the importance of participant retention in ongoing studies, and more. The conversation highlighted the resilience of the HD Community and the selflessness of their participation in clinical research, as well as the specifics of the KINECT-HD study on valbenazine for treatment of chorea in HD. Access the full episode of HSG’s HD Insights Podcast here.
Gene Veritas on Inequality in Research and Open Science
In his latest blog post, HD advocate “Gene Veritas” discussed social division and ethical dilemmas associated with access to medical care. Specifically, Gene focused on the need for scientific advancements like the COVID-19 vaccine and one day, treatments for rare genetic diseases like HD, to be available to all they effect without socioeconomic or geographic barriers to access.
In order to achieve broadest distribution of medical innovations, Gene discusses the need for greater collaboration between biomedical research groups with a call to reimagine the way we develop drugs. Open science was highlighted as a model that promotes sharing science as we go rather than racing to the finish line in parallel research efforts.
Former HDSA Berman-Topper fellows, Drs. Rachel Harding and Tamara Maiuri, prioritize this mode of collaboration in their work by sharing research milestones in openlabnotebooks.org, an online forum for scientists to share their research. This platform allows researchers to learn from each other’s discoveries and gives anyone an inside scoop on what goes on in the lab. Get a snapshot of Dr. Harding’s work in her “My Research in Two Minutes” summary here.
