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The Sturge-Weber Foundation

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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.

06/05/2026

We’re still smiling from ear to ear. 💜

Even though our Month of Awareness officially wrapped just five days ago, the impact of this incredible community continues to shine brightly.

A special thank you to John R. McLaren, MD, for sharing this beautiful photo of Boston Children’s Hospital lighting up the night in support of the Sturge-Weber Foundation. Moments like this are powerful reminders that awareness doesn’t end with a calendar—it lives on through each of you.

Together, we are seen. Together, we are stronger. 💜

06/04/2026

We are all smiles at the Sturge-Weber Foundation! 💜

Our Founder, Karen Ball, just received her copy of Different Shades of Brave: Book 1 by Brittany Noyes—and we couldn’t be more excited to share this special moment.

This heartfelt story introduces us to Lila, a young girl navigating school, friendship, and a new diagnosis with courage and honesty. Through her journey, readers are reminded of something powerful: no one walks this path alone.

More than just a story, this book is a meaningful resource for families, children, and classrooms—helping build understanding, foster empathy, and celebrate what makes each of us unique.

📖 Now available: https://www.barnesandnoble.com/w/different-shades-of-brave-brittany-noyes/1150105993?ean=9798256349615&fbclid=IwY2xjawSOetxleHRuA2FlbQIxMABicmlkETFXTmVTSGxvd3NrUmN6c2p4c3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHsEVRk6eWe6j8ZtWg-bwUXyWkqZntVsGpiIXyCXE9Yeb9XmbpiAdV7DOouui_aem_E2bONZWtOO6Ih6WtWyq1Sw

06/02/2026

🎙️ PODCAST DROP — Click here to watch the release!
https://www.dermatologytimes.com/view/don-t-be-rash-the-sturge-weber-foundation-s-40-year-case-for-early-coordinated-care

For clinicians, port-wine birthmarks may be familiar—but for families, a diagnosis can mark the beginning of a far more complex journey.
In a powerful Don’t Be Rash conversation, Dr. Andrew Krakowski sits down with SWF CEO Karen Ball and Director of Community Relations Julia Terrell—both mothers of daughters with Sturge-Weber syndrome—to share expert insight and lived experience.
💡 Key takeaways:
• Early ophthalmologic evaluation is critical
• Neurologic baseline imaging matters
• Coordinated, multidisciplinary care changes outcomes

Through initiatives like our Clinical Care Network and research grants, the Sturge-Weber Foundation is working to ensure families have access to expert care, trusted information, and hope from day one.

There is still more to learn—and more to solve. Together, we can move research forward.
🔗 Learn more & connect: sturge-weber.org
📩 Join the conversation: [email protected]

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

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

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.

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

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.

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

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

http://www.sturge-weber.org/

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