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

The Sturge-Weber Foundation

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The Sturge-Weber Foundation

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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.

10/21/2026

🔬 Representing the Sturge-Weber community at PeDRA

We are so proud to have Karen Ball and Julia Terrell representing our community at the Pediatric Dermatology Research Alliance (PeDRA), alongside Dr. Craig Burkhardt.

Being present in spaces where research, clinical expertise, and patient advocacy come together is an important part of advancing understanding of Sturge-Weber Syndrome (SWS).

Our team is proud to help ensure that the voices, experiences, and needs of those living with SWS remain part of the conversation, while building connections with researchers, clinicians, and advocates who are working toward better understanding, better care, and ultimately better outcomes.

💙 Leadership. Collaboration. Research. Community.

10/19/2026

🕯️ TONIGHT. You’re invited.

Be The Torch, Be The Light
✨ A Circle of Hope, Healing & Faith for Families and Warriors

Tonight from 7:30–8:30 PM, we’re gathering within the Sturge-Weber Foundation community for a peaceful space to pause, reflect, connect, and lift one another up.

Whether faith is a big part of your life, something you’re exploring, or simply a source of hope and strength — you are welcome here. ❤️

https://app.theauxilia.com/registrationEvent/c8cca2e8-09a7-4c1f-be46-7918253a809a

10/15/2026

💜 A Weekend of Connection at Epilepsy Camp 💜

One of the most special parts of Epilepsy Camp was having three Sturge-Weber families spend the weekend together.

For our children, it was a chance to simply be kids — to make friends, laugh, explore, and spend time with others who understand parts of their world in a way that not everyone can.

And it wasn't just the kids.

Watching the siblings connect and build friendships of their own made the weekend even more meaningful. Because Sturge-Weber affects the whole family, and having a community that understands that matters.

There was something so special about watching these friendships begin to form. 💜

Weekends like this remind us that we are not alone on this journey.

We left with full hearts, beautiful memories, and an even stronger sense of community — grateful for the friendships being built and for the reminder that there is so much strength, joy, and love in finding your people.

Here's to more moments like these. 💜

10/13/2026

When Jillian’s parents were told she might only live to 10, no one could have predicted the life she would go on to build.

They couldn’t see the person she would become.
They couldn’t see the determination, the dreams, the accomplishments — or the fact that she would one day earn her master’s degree. 🎓

But her parents did.

They believed in her. They raised her to believe in herself. And today, Jillian carries that belief with her — proudly.

Her story is a powerful reminder that a diagnosis does not define a person’s potential. Sturge-Weber syndrome is part of Jillian’s story, but it is not the whole story.

To every parent raising a child with Sturge-Weber syndrome: keep believing. Keep encouraging. Keep seeing beyond the diagnosis.

Because sometimes, the people who believe in us before we can believe in ourselves are the ones who help us discover just how far we can go. 💜 https://www.youtube.com/watch?v=qd5n4fKZk2I

10/12/2026

📣 Your voice has the power to make a difference.

RARE Disease Week 2027 is happening March 2–4, 2027, in Washington, DC, bringing together advocates from across the country to share their stories, raise awareness, and make their voices heard by Members of Congress.

And there’s help available to make getting there possible. ❤️
The RARE Foundation is offering a limited number of travel reimbursements for individuals and caregivers attending RARE Disease Week.
Whether you’re new to advocacy or have been advocating for years, you are welcome—and your voice matters.

🗓️ March 2–4, 2027
📍 Washington, DC
✈️ Travel reimbursements available
⏰ Application deadline: November 6, 2026

If you’ve ever wanted to share your Sturge-Weber story, advocate for the SWS community, or help policymakers better understand the realities of living with a rare disease, this is an opportunity to make your voice heard.

👉 Apply for a RARE Disease Week travel reimbursement and take your story to Washington. https://www.surveymonkey.com/r/SF5MT27?

10/09/2026

🍂🏈 FALL SPORTS SPIRIT! WHO ARE YOU CHEERING FOR? 📣💜💚

Meet Taylor! 💜 Taylor has bilateral Sturge-Weber Syndrome and absolutely LOVES watching her dad coach. She's always right there on the sidelines, repeating his calls and cheering on the team!

Last year, Taylor got to experience something extra special — becoming part of the cheer team herself and even getting her very own uniform! 📣✨

We love seeing our Sturge-Weber warriors find joy in the things they love!
Now it's YOUR turn! 🍁

🏈 What fall sport are you cheering for?
📣 Who's your favorite team?
💚 Do you have a SWF warrior bringing the spirit from the sidelines?

Share your team, your photos, and your fall sports spirit in the comments! We'd love to cheer alongside you. 💜

10/07/2026

💗 TWO OPPORTUNITIES TO CONNECT THIS WEEK

You don’t have to navigate Sturge-Weber Syndrome alone. 💚
Join the Sturge-Weber Foundation for two virtual opportunities to connect, share, listen, and find support this week.
🌸 TONIGHT — Patient Mental Health Chat
📅 Wednesday, October 7
🕢 7:30–8:30 PM EST
A supportive conversation for individuals living with Sturge-Weber Syndrome to talk openly about mental health, share experiences, and connect with others who understand.

🌿 TOMORROW — SWF Caregiver Connect
📅 Thursday, October 8
🕢 7:30–8:30 PM EST

A welcoming space for caregivers to connect with one another, share experiences, exchange resources, and find encouragement within the Sturge-Weber community.

✨ Whether you're joining for the first time or reconnecting with familiar faces, we'd love to have you with us.

👉 Registration is required. Click the link to register for the conversation(s) you’d like to attend.
https://sturge-weber.org/events/events.html

10/05/2026

📚✨ First Picture Day with Glasses! ✨📚

Ruby’s first picture day with glasses! 💗🤓
Ruby has been blessed to not need glasses until now, so this back-to-school milestone feels extra special. We love seeing our Sturge-Weber community’s back-to-school photos — the smiles, the new outfits, the backpacks, and all those exciting firsts! 🎒📸

Now we want to see yours! 💚💗

Share your back-to-school pictures with us in the comments or tag the Sturge-Weber Foundation so we can celebrate our amazing community together!

Here’s to a wonderful school year filled with learning, growing, friendship, and lots of reasons to smile. 💕📚

10/01/2026

We’re proud to partner with DEEP! 💜

Big things are happening as DEEP begins an exciting new chapter, and the Sturge-Weber Foundation is honored to be part of it.

Formerly DEE-P Connections, DEEP is expanding its vision for collaboration and connection across the developmental and epileptic encephalopathy (DEE) and severe neurological impairment (SNI) communities.

✨ A new name and brand
✨ A new five-year Strategic Plan
✨ A redesigned website
✨ A broader vision for connection, collaboration, and support

At SWF, we know how powerful it can be when families, advocates, clinicians, researchers, and organizations come together. We’re excited to partner with DEEP and contribute to a stronger, more connected community.

Together, we can help create more connection, advance understanding, and improve outcomes for individuals and families. 💜

🔗 Explore the new DEEP: www.dee-p.org

09/30/2026

Behind every photo is a story. Behind every story is hope.

Our Sturge-Weber community is filled with incredible warriors, families, caregivers, and supporters who inspire us every day. Each photo represents a journey, a moment, a milestone, or a reminder of the strength found within our community.

We’d love to continue celebrating YOU! 💚

📸 Have a photo or special moment you’d like to share with the Sturge-Weber Foundation? Post it here! We’d love to see your smiles, milestones, family moments, and everyday victories—and, with your permission, share them with our community.

Together, we raise awareness.
Together, we support one another.
Together, we create hope.

Awareness • Support • Research • Hope

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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