News & Updates
CureSHANK Community News: June 2026
As an organization led by Phelan-McDermid syndrome parents, we know that our movement wouldn't be here without the love, hope, and drive of PMS caregivers and advocates. This month, we're proud to offer multiple opportunities for caregivers and advocates to share their insights and to celebrate their loved ones.
In this issue, our CSO Ralf Schmid shares highlights from the 2026 ASGCT Annual Meeting, where gene therapy for brain diseases made major strides. We're also celebrating the launch of the Start Genetic Community Newsletter, spotlighting Genetic Testing Action Day on July 25th, and featuring new research participation opportunities, including the PMS Caregiver Milestone Study.
Gene Therapy for Brain Diseases: Highlights from the 2026 ASGCT Annual Meeting
At the 2026 ASGCT Annual Meeting, gene therapy for brain diseases took center stage with a landmark clinical update for Dravet syndrome and promising results for conditions similar to PMS. Our CSO breaks down what happened, what it means, and what still stands in the way.