Phelan-McDermid Syndrome Foundation

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

Make your voice heard! In 2026, Pathways has evolved into a collaborative program designed to ensure community experienc...
04/24/2026

Make your voice heard! In 2026, Pathways has evolved into a collaborative program designed to ensure community experiences directly shape family resources, clinical guides, research initiatives, and programming like conference sessions.

Join monthly virtual discussions focused on key topics identified by the community:

- May: Regression and loss of skills
- June: Neuropsychiatric illness

Sign up for the May Regression and Loss of Skills Focus Group, which meets on Tuesday, May 26 at 1pm ET using the link in the comments! You will receive details about required pre-work after you register.

⏰Don’t forget!A new virtual research opportunity for Phelan-McDermid syndrome families is on the horizon! Join Jaguar’s ...
04/23/2026

⏰Don’t forget!
A new virtual research opportunity for Phelan-McDermid syndrome families is on the horizon!

Join Jaguar’s upcoming community webinar to hear directly from the research team, understand
the purpose of the study, and find out what participation involves.

Open to all caregivers of loved ones 2-30 years old who want to stay informed and engaged with Phelan-McDermid syndrome research efforts.

📅When:
April 28, 4:00 PM PDT / 7:00 PM EDT
April 29, 7:00 PM PDT / 10:00 PM EDT

Registration link in the comments.

See link in comments for more information about the study.

Dr. Katy Phelan has been part of this community from the very beginning, and continues to be a driving force today.As a ...
04/22/2026

Dr. Katy Phelan has been part of this community from the very beginning, and continues to be a driving force today.

As a member of our Scientific Advisory Committee, a dedicated researcher, and a familiar presence at our conferences, her commitment to individuals and families with Phelan-McDermid syndrome remains unwavering.

Moments like this, connecting Dr. Phelan with our CEO, Robbie Baker, and CSO, Dr. Lauren Schmitt, reflect the strength of a community built on collaboration, continuity, and shared purpose.

Together, we keep moving forward.💚

We did it — thanks to YOU! 🌟Together, we made rare SHINE and doubled our impact for PMSF families. Your generosity suppo...
04/16/2026

We did it — thanks to YOU! 🌟

Together, we made rare SHINE and doubled our impact for PMSF families. Your generosity supports diagnosed families, drives scientific breakthroughs, and spreads hope for Phelan-McDermid syndrome.

Over 24 hours, we raised $81,937 and engaged 364 members of our community: thank you!!!

and celebrate the impact we made together!

Huge thank you to the Community Foundation of Sarasota County with giving strengthened by The Patterson Foundation for matching donations and multiplying our impact.

This was an amazing 24 hours and we are in awe of this community. From the bottom of our hearts: thank you!

💚 If you missed the Giving Challenge, it’s not too late to make an impact. You can still support PMSF families at donate.pmsf.org

Last call ⏰The Giving Challenge ends at noon ET, and time is almost up.We’ve raised $37,634 in individual donations so f...
04/16/2026

Last call ⏰

The Giving Challenge ends at noon ET, and time is almost up.

We’ve raised $37,634 in individual donations so far, and thanks to a generous donor, up to $15,000 in donations are being matched right now in this final hour.

That means your gift of any size up to $15,000 can go even further right now.
Donations of $25–$100 are still being matched through the Giving Challenge, and now additional gifts will be matched again through this special opportunity. This additional match makes your impact even greater.

This is the moment to act. If we unlock this final match, we will get there.

Give now before time runs out: http://givingchallenge.org/organizations/phelan-mcdermid-syndrome-foundation

and help us finish strong.

The Giving Challenge is presented by the Community Foundation of Sarasota County with giving strengthened by The Patterson Foundation.

Good morning! ☀️We’re heading into the final hours of the Giving Challenge and have raised $29,519 so far toward our $60...
04/16/2026

Good morning! ☀️

We’re heading into the final hours of the Giving Challenge and have raised $29,519 so far toward our $60,000 goal.

And we have exciting news!

A generous donor has stepped up overnight to match up to $15,000 in donations from now until the end of the Challenge.

That means your gift of any size up to $15,000 can go even further right now.

Donations of $25–$100 are still being matched through the Giving Challenge, and now additional gifts will be matched again through this special opportunity, doubling their impact.

Help us make the most of this moment and finish strong:

http://givingchallenge.org/organizations/phelan-mcdermid-syndrome-foundation

to make rare SHINE!

The Giving Challenge is presented by the Community Foundation of Sarasota County with giving strengthened by The Patterson Foundation.

It’s still not too late! 🌏 If you’re joining from outside the U.S., your donation can be doubled and help PMSF families ...
04/16/2026

It’s still not too late! 🌏 If you’re joining from outside the U.S., your donation can be doubled and help PMSF families worldwide. Join the to turn $100 into $200 in 24 hours.

Thank you to Dana Winrow, Blaire Malkin, Carolyn Savastano, and Patricia O'Boyle for your generous donations!

Donate here: http://givingchallenge.org/organizations/phelan-mcdermid-syndrome-foundation

and make a global impact.

The 2026 Giving Challenge is presented by the Community Foundation of Sarasota County with giving strengthened by The Patterson Foundation.


Thank you to Dana Winrow, Blaire Malkin, Carolyn Savastano, and Patricia O'Boyle for your generous donations!

Evening check-in! 🌟 We’re getting closer to the halfway mark of our fundraising goal! Can you help us reach it?Unique gi...
04/15/2026

Evening check-in! 🌟 We’re getting closer to the halfway mark of our fundraising goal! Can you help us reach it?

Unique gifts of $25 to $100 get matched dollar-for-dollar, so every gift goes twice as far to support families and fuel research.

http://givingchallenge.org/organizations/phelan-mcdermid-syndrome-foundation

Together, let’s hit our fundraising goal to bring MORE support for families and drive MORE research for life-changing treatments!

to make rare SHINE!

The 2026 Giving Challenge is presented by the Community Foundation of Sarasota County with giving strengthened by The Patterson Foundation.

We’re so grateful to Cynthia for both her generous support and for sharing what this Giving Challenge means to her famil...
04/15/2026

We’re so grateful to Cynthia for both her generous support and for sharing what this Giving Challenge means to her family. Her words capture exactly why this work matters.

Every donation right now not only moves us closer to breakthroughs for our community. It also helps unlock additional Giving Challenge prize opportunities that multiply the impact of each gift.

If you’ve been considering giving, now is a powerful time to join in. 💪
http://givingchallenge.org/organizations/phelan-mcdermid-syndrome-foundation

to help us support more families and accelerate research.

The 2026 Giving Challenge is presented by the Community Foundation of Sarasota County with giving strengthened by The Patterson Foundation.

We’re just 2 hours in and already at $10,043 💪A huge thank you to Dale Zajicek and the Kress family for their incredibly...
04/15/2026

We’re just 2 hours in and already at $10,043 💪

A huge thank you to Dale Zajicek and the Kress family for their incredibly generous $1,000 gifts to help kickstart this momentum. What an amazing way to show up for PMSF families.

We still have a bit to go to reach our $60,000 goal, and this is where we need you.

Every donation of $25–$100 is being matched dollar for dollar during these 24 hours, so every gift goes twice as far.

Help us keep it going:
http://givingchallenge.org/organizations/phelan-mcdermid-syndrome-foundation

to help us support more families and accelerate research.

The 2026 Giving Challenge is presented by the Community Foundation of Sarasota County with giving strengthened by The Patterson Foundation.

04/15/2026

🎥 Join Dr. Lauren Schmitt LIVE on Facebook tomorrow at 12 PM ET as we kick off the Giving Challenge and share how your support is driving research forward.

Make your gift count during the 2026 Giving Challenge!

Unique gifts of $25–$100 will be matched dollar-for-dollar, doubling your impact for research, family support, and care. Every gift matters—and every gift goes twice as far.

to make rare SHINE!
Together, we drive breakthroughs and spread hope for Phelan-McDermid syndrome.



The 2026 Giving Challenge is presented by the Community Foundation of Sarasota County with giving strengthened by The Patterson Foundation.

https://www.givingchallenge.org/organizations/phelan-mcdermid-syndrome-foundation

We’re live! 🚀The 2026 Giving Challenge is ON! Every unique donation $25–$100 will be matched dollar-for-dollar, doubling...
04/15/2026

We’re live! 🚀

The 2026 Giving Challenge is ON! Every unique donation $25–$100 will be matched dollar-for-dollar, doubling the impact for PMSF families!

Click here to make $100 into $200 and turbocharge research for Phelan-McDermid syndrome! http://givingchallenge.org/organizations/phelan-mcdermid-syndrome-foundation

🎥 Join us LIVE today at 12 PM ET as we kick things off and share how your support is driving research forward!

to make rare SHINE!

The 2026 Giving Challenge is presented by the Community Foundation of Sarasota County with giving strengthened by The Patterson Foundation.

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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