Advocacy Story: Because Everyone Deserves Dignity.
Chrissy & Alaina speaking at the ground breaking for 1st rest stop in TN by Chrissy HoodWhen a family prepares to…
Inspiring posts about PMS families and individuals
“First 100 Days”
Welcome to the “First 100 Days of your membership with the Phelan-McDermid Syndrome Foundation.
“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.
The Story of Bill Kress
Hi, I’m Bill Kress. I turned 41 in February and in the same month received a diagnosis of Phelan-McDermid Syndrome through…
Video: A Sibling’s Story
Katherine Ellis shares her thoughts on how growing up with Andrew, her brother with Phelan-McDermid syndrome, has changed their family for…
Video: One Child’s Journey to Communication
The Phelan McDermid Syndrome Foundation and Cecilia's family are delighted to share a part of their family story. Cecilia was diagnosed…
Video: LeClaire Family Story
The parents of a child diagnosed with Phelan-McDermid syndrome share their experience with diagnosis, raising awareness and fundraising with "Logan's Heroes". …
Loving Ellie
Nothing can prepare you for your child’s diagnosis. It doesn’t matter their age or if you saw it coming. It’s painful…
Lizzy’s World
I live in Lizzy’s World.It is not quite the same world everyone else lives in.My world revolves around my 13 year…
Sierra’s Story
As told by her mother, Bonnie Fly.How do you tell the story of someone who has no words? As her mother,…