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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.

03/16/2026

WOW! SWF is so proud of the Team Brave Like Ezra Walk. We're so grateful to Clara Gulino for sharing this wonderful news with us. 💜

Team Brave Like Ezra came together for a community walk to honor Ezra, friends in the community with epilepsy, and all our fellow SWS warriors on their journey. This is what community power looks like—united, strong, and unstoppable.

Clara shares a specific thank you to everyone who showed up and stood with them.

03/13/2026

Happy Friday, SWF Warriors! 🎉

"Alone we can do so little; together we can do so much." - Helen Keller

We're grateful for our incredible community of doctors, clinicians, researchers, patients, caregivers, and support personnel working together to advance care for Sturge-Weber Syndrome. What are you celebrating this Friday? Drop a comment below and let us know what you're up to this weekend! 👇

03/12/2026

So proud of our Sturge Weber Foundation community—and of young advocates like Marissa Terrell. As a Teen Speak Up! 2025 Advocate, Marissa presented her year-of-service project to the Epilepsy Monitoring Unit at Nemours Children’s Health: thoughtful care boxes for pediatric epilepsy patients filled with socio-emotional support tools, epilepsy education resources, and special goodies to brighten their stay.

Thank you, Marissa (and the Terrell family), for your compassion, kindness, and commitment to supporting kids and families when they need it most.

03/11/2026

Sturge-Weber Syndrome Clinical & Research Roundtable
March 21 | 1:00–2:00 PM

Featuring: Anna Pinto, MD (Emory University) and Jeffrey Loeb, MD (University of Illinois Chicago)
Join us for a one-hour, interactive roundtable focused on Sturge-Weber syndrome (SWS) across the lifespan. This open forum will include discussion on clinical care, emerging research, care coordination, and real-world challenges—with plenty of time for participant Q&A.

This session supports ongoing efforts to strengthen clinical–research–community collaboration and advance care for individuals and families living with SWS.

Sponsored by UCB
Register here! https://app.theauxilia.com/registrationEvent/3005fb7a-c98c-443f-8846-347e401b235d

03/10/2026

🎉 Happy 26th Birthday, Jayden! 🎂

At SWF, we celebrate EVERY milestone with our community. Birthdays, achievements, victories—these moments remind us of the strength and resilience that defines our family.

Today we're celebrating YOU, Jayden! Wishing you a day filled with joy, laughter, and all the love from our SWF community. Here's to 26 amazing years and many more to come!

03/06/2026

🌟 You're Invited: Reunion of Champions 2026 🌟
Join us for an evening celebrating hope, strength, and the champions making a difference in Sturge-Weber syndrome research and care.

This year, we're honoring:
🏆 ROC Honoree: Paul M. Friedman, MD
🏆 Legacy Leader: Brian Biesman, MD, FACS
With Master of Ceremonies: Roy Geronemus, MD

The Reunion of Champions (ROC) is our yearly fundraising kick-off that supports Sturge-Weber syndrome research, education, awareness, and patient/caregiver support. It's a moment to celebrate impact, honor leadership, and plant seeds of hope.

📍 Downtown Aquarium, Denver, CO
📅 Friday, March 27, 2026
🕖 6:30 PM – 9:00 PM
Gems of Hope and Strength—be part of the movement.

https://sturge-weber.org/events/events.html/event/2026/03/27/reunion-of-champions-gems-of-hope-and-strength/551765

03/05/2026

Hello March SWF! We have events that we want you involved in this month! Check out our lineup for March:

🎯 March 12 - Caregiver Chat
🔥 March 16 - Be the Torch. Be the Light.
🎮 March 24 - SWF Gaming Lounge - Virtual Hangout
🏆 March 27 - Reunion of Champions: Gems of Hope and Strength in Denver

Whether you're looking to connect with other caregivers, find inspiration, have some fun, or celebrate our community's strength, there's something for everyone this month. Don't miss out!

Ready to join us? Head over to our events page to register and learn more about each event.

https://sturge-weber.org/events/events.html

03/04/2026

We received a sweet note from our founder, Karen Ball, and it stopped us in our tracks:

“The years tell us much that the days never knew. Raise your hand if you have family photos on your refrigerator! As you can see from my refrigerator, I am a pack rat and huge photo lover. The days go by so quickly and the photos of my kids when they were younger remind me what I’ve overcome during the ensuing years. They also remind me that times of trouble during them can often seem so overwhelming… seem as if they will never resolve and peace will return. Yet, the years tell us much, that the days never knew!

The grown-up photos remind me of what a job I’ve done in guiding them into adulthood… good, bad, and ugly! Yes, believe it or not Kaelin didn’t come with a manual and Derek definitely didn’t! The other photos remind me that without family and friends to share the journey with me what would life mean. I only hope I’ve been as good a source of comfort and inspiration as they have for me.

The lil quips and sayings also reassure me and uplift me. As many of you who know me do know, I live in joy and seek it every day in every way. Random chats with strangers in the grocery line. Silly lil songs in my head that make me laugh. Facebook reels to be shared with friends and family to lighten their day.

My parents taught me a long time ago to laugh in the face of adversity. Really roll with it when you’re in the trenches because you WILL come out on the other side!” —Karen Ball

What’s one small thing that brought you joy today?

03/03/2026

You're invited to the SWF Patient Connect – Monthly Virtual Meet-Up! 🤝

Join us TOMORROW, Wednesday, March 4th at 7:30 pm EST for a supportive virtual chat with other adults (21+) living with SWS.

This is your space to bond, laugh, and talk about mental health and life challenges in a safe, moderated environment. Our Mental Health Task Force Leader Luis Sandoval, PhD will guide the conversation.

We hope to see you there! Register now to get your Zoom link: https://app.theauxilia.com/registrationEvent/3fc06d14-b9e2-4977-97ef-1d9534f4e1b0

03/02/2026

We love seeing the spirit of dance in our community! ✨

Our SWF warrior, Ruby Jo, is shining bright in tap and ballet 🩰 — showing strength, grace, and so much heart every step of the way.

Keep dancing, Ruby Jo! 💛 Happy Monday!

02/27/2026

Happy Friday SWF community! We know that weekends are full of fun activities and hobbies. Here we are featuring one of our warriors who enjoys cheer! We love that spirit and see all of your hard work you have put into this sport. What are everyone else's hobbies? Share with us and send us photos so we can know what fun our community has!

02/26/2026

Rare Disease Week on Capitol Hill! This free multi-day event brings together rare disease advocates from across the country to make their voices heard with their Members of Congress.

Participants are educated on policy proposals impacting the rare disease community and provided direct opportunities to advocate for policy change.

Learn more: https://everylifefoundation.org/rare-advocates/rare-disease-week/

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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