We’d like to thank everyone that has enrolled in the AGS Patient Registry! We’re writing a COVID/Pandemic study now to catalog, among a few other things, experiences with COVID infection and vaccines in AGS. This information will be invaluable to AGS families that have been forced to navigate a difficult pandemic with fears of dangerous comorbidities and a disease stimulated by viruses and (potentially) by COVID vaccines. Based on community feedback, we’ll begin by collecting data about outcomes with COVID vaccines to help build a risk/safety profile that will go along with Dr. Adeline Vanderver’s in vitro experiments with AGS tissue samples and mRNA vaccines.

Have you joined our Facebook Group? AGS families use this group to keep up with information, tips, suggestions, etc. and to talk with the few other people that really understand what living with AGS is like.