Skraban-Deardorff Syndrome Foundation

09/19/2026

📣 Foundation update! New committee, new chair.

We're excited to welcome Samantha Tieman as the new chair of our General Volunteer & Operations Committee!

Sam is already making great progress in getting the foundation more organized and efficient.

She will be creating a database of everyone who wants to stay involved with the foundation. We'll use this to help find opportunities that fit your skills and availability, and to keep you in the loop on foundation projects and goals. We can help place you on a committee that you're interested in, or simply reach out when we need a hand!

If you are interested, please take a moment to fill out the Google form in the comments — it only takes a few minutes!

09/11/2026

📣You're invited! Join us for the SKDEAS board meeting this coming Monday, September 14th, to hear all the latest updates on what's been happening behind the scenes for our community. We hope to see you there!
Link to join: https://zoom.us/j/9533528580?pwd=TVR0aXA0QjdER24xNmsrVHYxZ3QyUT09&omn=92998576354

06/21/2026

Big news: we've crossed the halfway point for the 2026 SKDEAS Family Meeting, and we have less than a month to go.

This July 15 to 18, families on the Skraban-Deardorff journey will come together in Philadelphia, hosted at Children's Hospital of Philadelphia (CHOP). It's our largest gathering yet, with more than 250 people joining in person and online from around the world.

So far we've raised $12,822 of our $25,000 goal. We're grateful to every sponsor who got us here, but we still have $12,178 to raise before the doors open.

Curious what your sponsorship makes possible? Take a look back at our 2024 meeting, where leading researchers and clinicians shared their work and families from more than a dozen countries connected. Those recorded sessions are still teaching our community today: https://www.skdeas.org/family-meeting-2024

Sponsorships are what keep this meeting free for every family who attends. A gift now, at any level, goes straight toward making that possible.

📋 Sponsorship details: https://www.skdeas.org/family-meeting-2026
💛 Sponsor today: https://secure.qgiv.com/for/familymeetingfundraising/

Please share this post. The right person seeing it could be the one who helps us close the gap.

05/30/2026

🌟 Sponsorship opportunities are now OPEN for the 2026 SKDEAS Family Meeting!

Every two years, families on the Skraban-Deardorff journey do something rare: they find each other.

This July 15–18, we're gathering in Philadelphia, hosted at Children's Hospital of Philadelphia (CHOP); our biggest meeting yet, with 250+ participants joining in person and from around the world.
And we keep registration completely free for every family. Sponsors are the reason we can.

✨ Here's how YOU make it possible.

A sponsorship of any size directly funds:
🪑 A free seat for every family, in person or online from anywhere
🔬 Flying in the doctors and researchers who study this syndrome
🍽️ The shared meals where the real connection happens
🎒 Welcome bags, shirts, and materials that greet every family
📸 Photography and A/V that capture memories families hold for years

When you sponsor, you're telling a parent navigating an ultra-rare diagnosis: you are not alone, and people are working for your child.

👉 Sponsorship details: https://www.skdeas.org/family-meeting-2026

👉 Sponsor today: https://secure.qgiv.com/for/familymeetingfundraising/

No gift is too small. 💛

Please share this post, your share could reach the sponsor who changes everything for our families.

Join us at the 2026 SKDEAS family meeting to share experiences, gain support, and learn about Skraban-Deardorff Syndrome from experts and families alike.

04/10/2026

Today, Zig Evans followed through on his commitment and cut his hair in support of Skraban-Deardorff Syndrome.

What started as a promise has turned into something truly meaningful. It’s a powerful act of love for his grandson and a moment that helps bring visibility to a condition that remains incredibly rare.

These moments matter. They create awareness, spark conversations, and continue to grow a connected, global community around SKDEAS.

We’re grateful to Zig and his family for sharing this with all of us.

🎥 Watch the video below and help us continue to spread the word.

If you feel moved to support or want to help raise awareness, you can do so here:
https://skrabandeardorffsyndromefoundation-bloom.kindful.com/

04/08/2026

A Powerful Show of Support for Skraban-Deardorff Syndrome 💙

On Monday, April 6th at 7pm (UK time), Zig Evans shared something incredibly meaningful. He is cutting his hair to raise awareness and support for Skraban-Deardorff Syndrome, following his grandson’s diagnosis in October 2024.

This act is more than a fundraiser. It is a moment of love, advocacy, and visibility for a condition that remains extremely rare.

Watch Zig’s announcement video below and join us in supporting this incredible effort.

If you feel moved to support or want to help raise awareness, you can do so here:
https://skrabandeardorffsyndromefoundation-bloom.kindful.com/

Every share, every conversation, and every act of support helps bring greater awareness to Skraban-Deardorff Syndrome and strengthens the global SKDEAS community.

02/28/2026

We know how special each individual in our global community is. It's why our SKDEAS team is fully committed to driving research, raising awareness, providing supports, and identifying effective treatments and therapies. Together, we can make the world a better place for each and every one of you.

02/28/2026

Rare is EVERYWHERE. Our community currently spans at least 27 countries across the globe!

1 in 10 Americans—our friends, neighbors, coworkers, classmates, and loved ones—lives with a rare disease.

Follow us, the National Organization for Rare Disorders, NORD, to support them this . Learn more at rarediseaseday.us.