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Phelan-McDermid Syndrome Foundation

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Phelan-McDermid Syndrome Foundation

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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.

11/02/2026

Thanks to the tremendous community support of Phelan-McDermid Awareness Day 2026, we’re heading into the season of giving knowing we can make an even bigger difference with your continued support. And not unlike Awareness Day, we’re asking for your help both in taking action and encouraging others to take action, too.

December 1, 2026, is GivingTuesday. This is a great time of year to consider a gift to the Phelan-McDermid Syndrome Foundation so we can strengthen our mission of making today better and the future brighter for everyone living with Phelan-McDermid syndrome — from the moment of diagnosis to the delivery of treatments and cures.

Support the Phelan-McDermid Syndrome Foundation on GivingTuesday 2026 to help us connect more families, improve medical care, and drive research breakthroughs towards treatments and cures.

For more than two decades, the Phelan-McDermid Syndrome Foundation has been at the forefront of funding research to advance our understanding of Phelan-McDermid syndrome and bring us closer to treatments and cures.

Giving Tuesday is December 1, but you don’t have to wait to make a difference. Make your gift today to help power connection, care, and research for individuals and families living with Phelan-McDermid syndrome. Link in comments.

You reading this matters. Your gift matters, too.

10/30/2026

We are happy to share the meeting dates and registration links for our November Family Support Groups. Please be sure to read the meeting descriptions carefully before you register to make sure you choose the right group for you.

These support groups are not individual or group therapy and are not intended to replace direct clinical services. Please note that these sessions are in English. All groups are 90-minutes long and are NOT recorded. If you have any questions, please email our Director of Family Support at [email protected].

The link to register for this month's groups is in the comments.

10/29/2026

📝 New Blog Post!

In this article, Dr. Lauren breaks down the recent advances and setbacks in rare disease treatments. She also covers what this means for Phelan-McDermid syndrome, and how PMSF is advancing research, clinical trials, and future therapies.

We are incredibly excited about the momentum and progress towards potential treatment and cures in Phelan-McDermid syndrome. We also know that families need support, connection, and high-quality medical care today.

10/28/2026

🚨Federal Medicaid changes are already underway, with additional changes taking effect in January 2027. The impact on people with disabilities, including those with Phelan-McDermid syndrome, will depend on their state and eligibility category.

Register for this webinar to understand what may change and how to prepare.

“Protecting Access to Care: Understanding Recent US Federal Medicaid Changes”

Monday, November 9, 2026 | 8:00–8:30 PM ET | Zoom

The webinar will cover:
• How federal Medicaid changes may affect coverage and access.
• Steps families can take to protect benefits and prepare for new requirements.
• Resources for personalized assistance.

This webinar is presented by Lundbeck.

Link to register in the comments.

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. 💚

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.

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.

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.

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

Website

http://www.pmsf.org/

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