The Sturge-Weber Foundation

The Sturge-Weber Foundation We are here to improve the quality of life and care for families with the rare disease Sturge-Weber syndrome and associated PWB and KT conditions.

What is Sturge-Weber syndrome? Sturge-Weber syndrome (SWS) is a rare disease caused by a GNAQ gene mutation that is present at birth. One in 20,000-50,000 children will be born with SWS each year. This disorder is not inherited and causes a birthmark on the face, glaucoma, epileptic seizures, and developmental disabilities. Each case of SWS is unique, with varying degrees of progressive medical issues. Research is essential so doctors may improve care and quality of life.

The Sturge-Weber Foundation is proud to partner with Lundbeck to help raise awareness about Developmental and Epileptic ...
05/30/2026

The Sturge-Weber Foundation is proud to partner with Lundbeck to help raise awareness about Developmental and Epileptic Encephalopathy (DEE) — a group of severe and rare epilepsies that can impact development, learning, movement, and quality of life.

Education and access to information matter, and we’re honored to help connect families and caregivers with important resources and ongoing research efforts.

🧠 Join the upcoming D.E.E.P. D.I.V.E. Virtual Webinar
📅 Monday, June 1, 2026
⏰ 8:30–9:30 PM ET
💻 Zoom

This educational session will provide:
✔️ An overview of DEE
✔️ Information on actively enrolling Phase 3 clinical trials
✔️ Responses to frequently asked questions
Together, we can continue advancing awareness, education, and hope for rare disease communities.

👉 Register now: https://zoom.us/webinar/register/5017769790698/WN_ceq3_KCVTW6qhuqCkhQmxQ #/registration

💙 As Sturge-Weber Syndrome Awareness Month comes to a close, one thing is clear… this community showed up.From our Kick-...
05/29/2026

💙 As Sturge-Weber Syndrome Awareness Month comes to a close, one thing is clear… this community showed up.

From our Kick-Off event to the Pass the Torch Challenge, patient and caregiver chats, the Boston Mini Summit, and so many powerful moments in between — you helped shine a light on SWS in a way that truly matters.

But awareness is just the beginning.

✨ Today is the Sturge-Weber Foundation Day of Giving.
Now is the time to turn that awareness into action.
Your donation supports:
🔬 Critical research
🤝 Patient & family support
🌍 Continued awareness so no one faces SWS alone

Let’s finish this month strong — together.
💙 Give today: https://app.theauxilia.com/pay/SWF%2520MOA

💙 Community in Action at ISSVA 💙Moments like this remind us what the Sturge-Weber community is all about—connection, col...
05/29/2026

💙 Community in Action at ISSVA 💙

Moments like this remind us what the Sturge-Weber community is all about—connection, collaboration, and a shared commitment to advancing research and care.

We’re proud to stand alongside patient groups, clinicians, and advocates from around the world at ISSVA, working together to make a difference for those impacted by Sturge-Weber syndrome and other vascular conditions.

💙 Today is the Sturge-Weber Foundation Day of Giving 💙

Join this incredible community in action by making a donation. Your support helps us continue funding critical research, advancing education, and supporting families every step of the way.

👉 Donate today: https://app.theauxilia.com/pay/SWF%2520MOA

Together, we are stronger. Together, we are making progress.

For years, Sebastian Salazar felt the weight of being different.Living with Sturge-Weber syndrome, he faced epilepsy, bu...
05/28/2026

For years, Sebastian Salazar felt the weight of being different.

Living with Sturge-Weber syndrome, he faced epilepsy, bullying, and moments of deep emotional struggle. There were times when the world didn’t understand him—and times when he questioned his own place in it.

But Sebastián didn’t let his story end there.

Through art, he found a way to transform pain into purpose. What began as a personal outlet became ManchART—a movement that turns “stains” into symbols of identity, strength, and resilience.

Today, Sebastián is using his voice to create awareness, build community, and remind others that what makes us different can also make us powerful.

💙 This is the impact of the Sturge-Weber Foundation.
On our Day of Giving, you can help us continue supporting individuals and families, advancing research, and building a more inclusive, understanding world.

👉 Make a gift today and be part of stories like Sebastián’s.
https://app.theauxilia.com/pay/SWF%2520MOA

🌍 Advancing SWS Awareness Around the World 💙We’re proud to share that our Chief Clinical Strategist, Jeff Loeb, MD, PhD,...
05/28/2026

🌍 Advancing SWS Awareness Around the World 💙

We’re proud to share that our Chief Clinical Strategist, Jeff Loeb, MD, PhD, was invited to speak in Poland at a recent international conference focused on neurocutaneous conditions.

Dr. Loeb presented on Sturge-Weber syndrome (SWS), helping bring greater awareness, education, and collaboration to the global medical and research community.

Moments like these are a powerful reminder that our mission reaches far beyond borders—and that together, we are making meaningful strides in understanding and supporting those impacted by SWS.

💙 Join us in advancing research and making an impact.
Please consider making a gift in support of the Sturge-Weber Foundation. https://app.theauxilia.com/pay/SWF%2520MOA

Thank you to our partners and colleagues around the world who continue to advance this important work.

💙 Month of Awareness: Patient Story 💙Today, the Sturge-Weber Foundation is honored to share Zaya’s journey, as told by, ...
05/27/2026

💙 Month of Awareness: Patient Story 💙

Today, the Sturge-Weber Foundation is honored to share Zaya’s journey, as told by, Cyan Dakota Morrison-Gray 💙

Zaya’s story is one of both simplicity and complexity—what began as a birthmark became part of a much deeper and more challenging journey. Since just 6 months old, Zaya has experienced epileptic seizures and stroke-like episodes, including periods of complete weakness on her left side.

Through it all, Cyan shares that finding the The Sturge-Weber Foundation and awareness community has been “nothing but a blessing”—offering support, understanding, and a place to turn during the most difficult moments.

Despite the uncertainty that comes with SWS, Zaya’s strength shines through every single day. Her journey is a powerful reminder of resilience, perspective, and the importance of slowing down and appreciating life’s everyday moments.

As Cyan beautifully shared, Zaya is “a rare gem,” bringing light, gratitude, and new meaning to her family’s life each day.

Thank you, Dakota Morrison-Gray, for trusting us to share Zaya’s story and for being such an important part of our community 💙

Please consider making a donation for the Sturge-Weber Foundation’s Day of Giving. Your support helps us continue funding critical research, advancing education, and supporting families impacted by Sturge-Weber syndrome. Donate Today: https://app.theauxilia.com/pay/SWF%2520MOA

We’re honored to share Ezra’s story, shared by his mom, Clara Gulino, as part of Sturge-Weber Awareness Month.After Ezra...
05/26/2026

We’re honored to share Ezra’s story, shared by his mom, Clara Gulino, as part of Sturge-Weber Awareness Month.

After Ezra was born, his family was told the reddish-purple areas on his face could be bruising… or a port wine stain. They were sent home without answers. Just days later, thanks to a caring family member, they began to understand there could be more to his story.

What followed were appointments, tests, and uncertainty. At 4.5 months old, Ezra experienced his first cluster of seizures — a moment no parent is ever prepared for. After a frightening hospital stay and initial misdiagnoses, Ezra was officially diagnosed with Sturge-Weber syndrome.

Clara found the The Sturge-Weber Foundation while still in the hospital — and with it, a community that made her feel less alone.

Over the past 19 months, Ezra’s journey has included countless appointments, therapies, hospital visits, and challenges. But through it all, his family remains deeply grateful — for the community, the research, and the people working every day to improve the lives of Sturge-Weber warriors.

💜 “We are grateful for those who work tirelessly to help manage symptoms, improve quality of life, and hopefully one day find a cure.”

As we close out Sturge-Weber Awareness Month, we ask you to stand with families like Ezra’s. Your donation helps fund research, provide family support, advance awareness, and bring hope to those living with Sturge-Weber syndrome.

Donate today: https://app.theauxilia.com/pay/SWF%2520MOA

This Memorial Day, we honor and remember those who made the ultimate sacrifice for our country.We are reminded of the st...
05/25/2026

This Memorial Day, we honor and remember those who made the ultimate sacrifice for our country.

We are reminded of the strength, resilience, and unity found in community—something we see every day within the Sturge-Weber community.

Today, we remember with gratitude. ❤️💙

Day 22 of SWF Month of Awareness 💜It’s time to LIGHT UP THE NIGHT for SWS! ✨A huge THANK YOU to Andrew C. Krakowski, MD ...
05/22/2026

Day 22 of SWF Month of Awareness 💜
It’s time to LIGHT UP THE NIGHT for SWS! ✨

A huge THANK YOU to Andrew C. Krakowski, MD for sharing this powerful photo of St. Luke’s in Allentown lit in support of Port-Wine Birthmark awareness. Seeing landmarks shine like this is a beautiful reminder of what awareness can do.

✨ And remember...it doesn’t have to be big to make an impact!
You can light up your porch, decorate your home, or even put lights on your car.

💡 We want to see the country shining all weekend long—so keep your lights on and keep sharing your photos!

📸 Tag us so we can share your light:
Facebook:
Instagram:

Day 21 of Month of Awareness at the Sturge-Weber Foundation 💜Julia Gilbert Terrell is still at the ISSVA World Congress ...
05/21/2026

Day 21 of Month of Awareness at the Sturge-Weber Foundation 💜

Julia Gilbert Terrell is still at the ISSVA World Congress (International Society for the Study of Vascular Anomalies) in Philadelphia, PA!

ISSVA plays a critical role in bringing together scientists and clinicians from around the world to advance research and care—and we’re proud to have Julia representing our community.

Even better? She’s been reconnecting with incredible friends and advocates of the Foundation along the way 💫From leaders in the field to fellow nonprofit partners, these moments highlight the power of collaboration in driving progress for the SWS community.

✨ Dr. Bernard Cohen (Johns Hopkins)
✨ Dr. Beth Drolet (University of Wisconsin–Madison)
✨ Moreen from PHACE Foundation
✨ Dr. Denise Metry (Texas)

Address

6105 S. Main Street , #200
Aurora, CO
80016

Opening Hours

Monday 9am - 4:30pm
Tuesday 9am - 4:30pm
Wednesday 9am - 4:30pm
Thursday 9am - 4:30pm
Friday 9am - 4:30pm

Telephone

+19738954445

Website

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