This week an article in STAT talks about the ongoing Roche GENERATION-HD1 trial. The story explains Huntington’s disease and covers the experiences of different individuals who are putting their hopes in the GENERATION-HD1 and other clinical trials. The accompanying video describes a trial participant’s family story. Lots of voices are captured here, including several HD families, HDSA’s Dr. George Yohrling, and Dr. Scott Schobel from Roche.
HD Insights Podcast
In the words of the Huntington Study Group, “the HD Insights Podcast is a long-form interview format in which the Huntington Study Group speaks with researchers in Huntington disease and those helping shape the future of HD treatments.” This week’s episode is an interview with HD advocate and historian Ken Serbin. He talks about participating in the recent HSG meeting, how his blog has helped him to increase awareness of HD and to find hope and community, his family’s experience around genetic testing, and his career. He also talks about how having an alias (Gene Veritas) has shaped his online and offline presence.
Gene Veritas: Thanksgiving Blog Post
Speaking of Ken Serbin (aka Gene Veritas), check out his Thanksgiving blog post about hope in the HD community, Brazilian artist and HD patient Priscilla Ferraz Fontes Santos, and dreams for the future.
We hope everyone enjoyed the Thanksgiving holiday. On this Thank You Thursday we acknowledge all the donors, volunteers, families, researchers, clinicians and friends who support HDSA’s mission to improve the lives of people with HD and their families.