Phelan-McDermid Syndrome Foundation

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Phelan-McDermid Syndrome Foundation Our official Foundation page aims to raise awareness of Phelan-McDermid syndrome

This is the official page of the Phelan-McDermid Syndrome Foundation, a 501 (c)(3) non-profit established by families impacted by a diagnosis of Phelan-McDermid syndrome/22q13 deletion.

What an incredible Phelan-McDermid Syndrome Awareness Day. 💚Thank you to every individual, family member, friend, advoca...
10/23/2026

What an incredible Phelan-McDermid Syndrome Awareness Day. 💚

Thank you to every individual, family member, friend, advocate, researcher, clinician, partner, volunteer, and supporter who helped make Phelan-McDermid syndrome more visible yesterday.

You wore green, shared stories, changed your profile pictures, displayed signs, gathered with others, lit landmarks, asked questions, and helped someone new learn about Phelan-McDermid syndrome. Every action mattered.

Now, we would love to see Awareness Day through your eyes! Send us your photos and videos of:

💚 Individuals and families celebrating
💚 Friends, schools, workplaces, and communities wearing green
💚 Family gatherings and local events
💚 Yard signs and awareness displays
💚 Landmarks shining green
💚 Any other special PMSAD moments

Upload your photos and videos here:
https://pmsf22q13.app.box.com/f/0328e357fb654aec83abf9e89122aad1

By uploading, you give PMSF permission to use the photos and videos in our communications and marketing materials.

Awareness does not end on October 22. Every question, conversation, and shared story continues to build understanding.

You Reading This Matters. You Sharing It Matters, Too.

Thank you for asking, learning, and sharing with us. 💚

🎙️ We're excited to share a new podcast from a familiar face in our community!For nearly four years, Dr. Al Freedman has...
10/23/2026

🎙️ We're excited to share a new podcast from a familiar face in our community!

For nearly four years, Dr. Al Freedman has facilitated PMSF's Caregiver Support Groups, helping families connect, share experiences, and support one another.

Now, Dr. Al is bringing his expertise and personal experience to Rare Resilience, a new podcast focused on mental health and emotional well-being in the rare disease community.

Through meaningful conversations and personal stories, the podcast explores the challenges, strengths, and experiences of individuals and families navigating rare diseases.

We're grateful for Dr. Al's continued support of our community and excited to share this new resource with families! Dr. Al will be continuing to facilitate our support groups as well.

Listen using the link in the comments.

One team. One shared commitment to the Phelan-McDermid syndrome community. 💚PMSF staff members may work from different p...
10/22/2026

One team. One shared commitment to the Phelan-McDermid syndrome community. 💚

PMSF staff members may work from different places, but today we are united in green for Phelan-McDermid Syndrome Awareness Day.

We are proud to stand with individuals with Phelan-McDermid syndrome, their families, and everyone working toward greater understanding, stronger support, better care, and more effective treatments.

From all of us at PMSF, thank you for reading, asking questions, learning, and sharing today and throughout the year.

You Reading This Matters.

Ask. Learn. Share.

10/22/2026

Meet Hudson. 💚

Life with Phelan-McDermid syndrome can be incredibly challenging. Hudson’s parents, Amanda and Bill, hold hope for treatments and cures that could change her future and the futures of others living with Phelan-McDermid syndrome.

But those challenges are not the whole of Hudson’s story.

When you truly get to know her, you discover so much joy and happiness. You see her personality, her relationships, and the ways she makes an impact on everyone around her. That is who Hudson really is.

In this family story, Amanda, Bill, and Hudson’s younger brother, Sullivan, share an honest look at their lives: the difficult parts, the hope they carry, and the person at the center of it all.

On Phelan-McDermid Syndrome Awareness Day, we invite you to meet Hudson and help someone else discover her story.

Thank you to Jaguar Gene Therapy for creating this video and providing PMSF and the Bergen family with a version to share with our community.

Want to stay connected to the Phelan-McDermid syndrome community? Join PMSF. Membership is free and open to everyone.

PMSF.org/join-pmsf

You Reading This Matters. You Sharing It Matters, Too.

Ask. Learn. Share.

Today is Phelan-McDermid Syndrome Awareness Day!Every family impacted by Phelan-McDermid syndrome deserves to be seen, h...
10/22/2026

Today is Phelan-McDermid Syndrome Awareness Day!

Every family impacted by Phelan-McDermid syndrome deserves to be seen, heard, and supported. Today, CureSHANK and PMSF are standing together to raise awareness for Phelan-McDermid syndrome.

Join us as we raise awareness for the Phelan-McDermid syndrome community.

10/22/2026

When you see us wearing these shirts, what do we hope you understand?

That Phelan-McDermid syndrome is more than a rare genetic diagnosis. That every person with Phelan-McDermid syndrome is different. That individuals can live beautiful, meaningful lives, and that families need strong systems of support.

We hope you see a warm and welcoming community filled with incredible individuals and families who deserve to be recognized, understood, and supported.

We hope you keep asking questions about what families need, what research has taught us, and what still needs to be done. Greater awareness can lead to greater recognition, more research, better treatments, stronger support, and a brighter future.

Today, on Phelan-McDermid Syndrome Awareness Day, PMSF staff members are proud to wear green and share what this community means to us. 💚

What do you want someone learning about Phelan-McDermid syndrome for the first time to understand?

Ask. Learn. Share.

Today is Phelan-McDermid Awareness Day! 💚Today, families, advocates, researchers, clinicians, and supporters around the ...
10/22/2026

Today is Phelan-McDermid Awareness Day! 💚

Today, families, advocates, researchers, clinicians, and supporters around the world are coming together to raise awareness and celebrate the individuals at the heart of our community.

We are asking everyone to do three simple things:

Ask
Start a conversation. Ask a family about their experience. Invite someone to tell you more. Questions asked with curiosity and respect can lead to greater understanding.

Learn
Take a few minutes to learn what Phelan-McDermid syndrome is, how it can affect individuals differently, and why research, clinical care, family support, and community connection all matter.

If you already know a lot about Phalen-McDermid syndrome, help someone else learn. Send them to our website or by sharing the one-page summary flyer. Both are available at pmsf.org/pmsad.

Share
Share a PMSF post, video, family story, or educational resource. Add a personal message about why awareness matters to you, or simply invite others to learn alongside you.

You read it. Now help someone else read it too. 💚

Ask. Learn. Share.

💜 Today is SUDEP Action DayWhat is SUDEP? SUDEP stands for Sudden Unexpected Death in Epilepsy, or the sudden, unexpecte...
10/21/2026

💜 Today is SUDEP Action Day

What is SUDEP?
SUDEP stands for Sudden Unexpected Death in Epilepsy, or the sudden, unexpected passing of a person with epilepsy when no other cause is identified.

Seizures and epilepsy affect approximately 40% of individuals with Phelan-McDermid syndrome, making seizure awareness and safety especially important in our community.

Creating a Seizure Action Plan and sharing it with family members, friends, caregivers, healthcare providers, therapists, and others involved in care can help ensure everyone knows how to respond when a seizure occurs.

Today, we honor those who have passed, stand alongside the families affected by SUDEP, and advocate for greater awareness, research, and support.

Link in comments to learn more about SUDEP and SUDEP Action Day.

Phelan-McDermid Syndrome Awareness Day is just two days away.With Phelan-McDermid Syndrome Awareness Day right around th...
10/20/2026

Phelan-McDermid Syndrome Awareness Day is just two days away.

With Phelan-McDermid Syndrome Awareness Day right around the corner, it’s a great time to learn or brush up on what Phelan-McDermid syndrome is and how individuals and families can have very different experiences, with no single story defining the condition.

In addition to the resources available through the link in our bio, including the one-page summary about Phelan-McDermid syndrome, be sure to watch and share the videos featuring Ellie and Bennett. Their families shared highlights from their personal journeys with Phelan-McDermid syndrome and what they want others to understand.

Every story shared can help someone new learn more.

You Reading This Matters. You Sharing It Matters, Too.

Ask. Learn. Share.

Address

8 Sorrento Drive
Osprey, FL
34229

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm
Saturday 9am - 5pm
Sunday 9am - 5pm

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