How are Phelan-McDermid Syndrome and Autism Related?
By Dr. Kate Still, April 2022 A large percentage (up to 80%) of people with a Phelan-McDermid syndrome diagnosis also have a…
“First 100 Days” Program Updates
We started the "First 100 Days" program a year ago and have had 100 US families join our membership in that time. We are so happy to be able to provide our new families with this intensive, personal, and differentiated support.
Neuropsychiatric Support Group Registration
Registration is open for our third support group topic, Coping With Neuropsychiatric Episodes. This support group will be open only to those caregivers in our community who have lost a child or adult with Phelan-McDermid syndrome.
Carter Family Adventures – Our Top Travel Tips
The Carter family shares tips and tricks on how to include your Phelan-McDermid syndrome loved one on family adventures.
SHANK3 in Phelan-McDermid syndrome
What is SHANK3? SHANK3 is a gene that is important for the development and function of the nervous system. Genes are…
PMSF 2023 Grant Award Recipients
PMSF announced a research grants program in January 2023 to provide funding to highly motivated scientists studying Phelan-McDermid syndrome. Our goal…
Grief Support Group Registration
Registration is open for our first Phelan-McDermid Caregiver Support Group. We are thrilled to invite you to register for our new Caregiver Support Groups. These groups will be a time for Phelan-McDermid syndrome caregivers to share their experience in a welcoming and supportive group setting.
Family Fundraiser: Turner’s Tribe
by Brooke Turner Jones, Mom to TurnerWe are excited about the prospects of PMS Awareness Day 2023, as it will be…
Family Support Update
There are some big things happening in the world of Family Support! Our Family Support Specialist, Carla D'Imperio, is working on improving our…
Welcome to our new Family Support Specialist
Phelan-McDermid Syndrome Foundation is excited to announce that Carla D’Imperio, MS has accepted the position of Family Support Specialist. Join us in welcoming Carla to the team!