Phelan Lucky is an online t-shirt/sweatshirt campaign that began in 2014 as the Randolph Family’s way of giving back to the Foundation. Since its inception, its popularity has grown! PMSF families across the globe have embraced the campaign and engaged their family, friends, schools, and businesses to join in on the fun. The shirts will arrive in time for St.Paddy’s Day and they make great gifts for friends, teachers and support staff. While the campaign has raised over $250K to date, the true power of the campaign is extended through the awareness that is generated from folks donning their apparel. read more
The purpose of this registry is to consolidate information from individuals with Phelan-McDermid Syndrome into a single database, which will be utilized by researchers to understand Phelan-McDermid Syndrome better. Sharing your medical data will make a world of difference.
Many families ask if there is a difference between joining the Foundation and enrolling in the registry. PMSF currently has 1949 individuals worldwide who interact with the Foundation through membership and/or participation in the registry.
This beautiful, short video will give you a better understanding of Phelan-McDermid Syndrome and the strength, love and perseverance of the families raising a child born with this rare condition.
PMSF and the Seaver Autism Center at Mount Sinai are collaborating to provide a new service to help doctors care for people with PMS who have challenging neuropsychiatric or behavioral problems. The newly formed Phelan McDermid Syndrome-Neuropsychiatric Consulting Group (PMS-NCG) is using a platform called ECHO, which allows for group video-conferencing. Our goals include improving the care of neuropsychiatric disorders in children and adults with Phelan-McDermid Syndrome and increasing the number of doctors who are equipped to handle these complex problems. Physicians may complete an intake form by clicking here.
Since 2012, the Seaver Autism Center at the Icahn School of Medicine at Mt. Sinai has been enrolling individuals with PMS in a clinical trial of IGF-1. The findings from the first pilot study were published here. Below is an update from Dr. Alex Kolevzon, the lead investigator, reporting findings from the second pilot study.