General Support Group: For caregivers of individuals ages birth to 18 (August 2026)
The Support Group for the Phelan-McDermid Syndrome Caregiver is an open group for all parents, guardians, and primary caregivers of Phelan-McDermid…
Residential Setting Support Group (August 2026)
This support group is for parents and guardians of individuals (adults and children) with Phelan-McDermid syndrome who live in an ICF,…
Grief Support Group (August 2026)
The “Coping With the Grief From the Loss of a Child” Support Group will be a closed group for those caregivers in…
Neuropsych Support Group (August 2026)
The “Coping With Neuropsychiatric Episodes” Support Group is a closed group for caregivers whose child is going through or has gone through a…
Clinic and Research Visit Ready: New PMSF Resources for Families
By Lauren Schmitt, PhDDate February 25, 2026Everyday, our families are taking their loved ones to clinic appointments, research visits, or under…
Protected: Family Gathering Ideas
Are you interested in taking the lead on planning a get-together for Phelan-McDermid syndrome families in your area of the United States? If you have an idea for a family gathering and you would like to plan it with support from our team, please fill out the form below and our Director of Family Support will reach out to you to help you get started.
Epilepsy and Seizure Update from the Natural History Study
Seizures are a big concern for families with children with Phelan-McDermid syndrome, but it's not always clear when or why they…
Updates to Pharmacological Recommendations for the Management of Phelan-McDermid syndrome
We are excited to release updates to our Pharmacologic Recommendations, which were recently finalized by our Phelan-McDermid Syndrome Neuropsychiatric Consultation Group…
Meet Denise Croden: President of the PMSF Board of Directors
Name: Denise CrodenTime Served on the Board: Since June 2021Board Role: PresidentDenise’s journey with PMSF began as an extension of her…