DSC-III and Data - CURE SYNGAP1 is working tirelessly to increase SYNGAP1 Knowledge #S10e203
Friday, April 3, 2026 - Week 14
Just back from the DSC-III Kickoff Meeting! As announced back in September 2025. Really strong group of clinicians.
dsc.rarediseasesnetwork.org/patient-advocacy-groups
More on DSC in #S10e184
curesyngap1.org/podcasts/syngap10/dsc-rdcrn-ncats-nih-press-aav-in-cell-srf-at-cb-scramble-for-syngap1-s10e184
We will have sites at SYNGAP1 established doctors, Dr. Wiltrout at Boston Children's Hospital/Harvard, Dr. Holder at Baylor and our very own ProMMiS Doctors: Knowles at Stanford / Dr. Abbott at Colorado. AND, excitingly, these two new locations:
Rush University Medical Center (Rush) led by Dr. Dr. Liz Berry-Kravis.
University of Alabama at Birmingham led by Dr. Martina Bebin.
Interestingly we are paired with PMS aka SHANK3 so the comparisons will naturally arise. Both post-synaptic, they are a half step ahead of us. (We will catch up!) ...