PL 2019

Phelan Lucky t-shirts available until January 28th

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

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Membership vs. Registry, What is the 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.

Click here to view a diagram that describes the difference and will give you the opportunity to join or enroll or both.  If you are not sure of your status, contact us.


Watch this video and learn how you can be the one to make a difference.

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.


Announcing a NEW resource for doctors who treat PMS patients

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.

photo of Dr. Alex Kolevson

Piloting Treatment with IGF-1 in Phelan-McDermid Syndrome

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.

Phelan-McDermid Syndrome Foundation

Memberships, Partnerships, Affiliations

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PMSF | Phelan-McDermid Syndrome Foundation