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.

Happy Tuesday from our SWF Team! What an amazing night at our Reunion of Champions, Gems of Strength. We celebrated Dr. ...
03/31/2026

Happy Tuesday from our SWF Team!

What an amazing night at our Reunion of Champions, Gems of Strength. We celebrated Dr. Friedman and Dr. Biesman, two remarkable leaders making a difference in our community.

The room was filled with inspiration, stories, and so much heart. We're grateful to our doctors, partners, and sponsors who came together to raise awareness and support our mission.

Look at the energy in this room. All together. All united. This is what it means to be part of the SWF family. πŸ’š

Sturge Weber Foundation Community! 🌟This week we're sharing moments from our Reunion of Champions event that happened la...
03/30/2026

Sturge Weber Foundation Community! 🌟

This week we're sharing moments from our Reunion of Champions event that happened last week! What an amazing night to honor Dr. Friedman and Dr. Biesman! Lots of laughs, lots of stories, and lots of awareness.

We're starting off with a beautiful pic of our SWF Power Team with the Denver sun shining on them! β˜€οΈ

Be on the lookout this week on our socials for takeaways from the event, sponsor shout-outs, and more!

03/28/2026

A remarkable night to celebrate Dr. Friedman and Dr. Biesman! A special shout out to our Master of Ceremonies Dr Geronem...
03/28/2026

A remarkable night to celebrate Dr. Friedman and Dr. Biesman! A special shout out to our Master of Ceremonies Dr Geronemus! Ample laughter, numerous stories, and heightened awareness was the theme of the night. An animal showcase was an added delight. What a night! Our gratitude to the honorees, sponsors, and attendees who contributed to the evening's success. The Sturge-Weber Foundation

πŸŽ‰ IT'S HERE! Today is our Reunion of Champions in Denver, Colorado!We are THRILLED to honor our ROC Honoree: Paul M. Fri...
03/27/2026

πŸŽ‰ IT'S HERE! Today is our Reunion of Champions in Denver, Colorado!

We are THRILLED to honor our ROC Honoree: Paul M. Friedman, MD and Legacy Leader Honoree: Brian Biesman, MD, FACS.

We are so grateful to have them in our Sturge Weber Foundation community and can't wait to be in their presence and honor them tonight. These incredible physicians have made a profound impact on our mission and our warriors.

Passing the torch. Blazing the trail. Lighting the way. πŸ”₯

03/26/2026

Meet Irinaβ€”a true warrior! πŸ’ͺ Recovering beautifully after surgery and showing us all what strength and resilience look like. We're so proud of you, Irina. Your courage inspires everyone around you. Here's to your healing journey and all the amazing things ahead! πŸ™Œ

✨ Make an impact. Change a life. Maybe even take the trip of a lifetime. ✨As we head into the 2026 Reunion of Champions ...
03/25/2026

✨ Make an impact. Change a life. Maybe even take the trip of a lifetime. ✨

As we head into the 2026 Reunion of Champions Gala this week (March 27), we’re asking our community to come together in support of families impacted by Sturge-Weber syndrome.

πŸ’™ Every donation makes a difference:
β€’ $50 sends comfort to children in the hospital
β€’ $100 provides care kits for kids in treatment
β€’ $250 helps build a brighter future for families

🎟️ Want to make your impact go even further?
Enter the Golden Ticket Raffle:
β€’ Only 100 tickets available
β€’ Chance to win a luxury travel experience
β€’ Incredible odds to win β€” while giving back

✈️ One lucky winner will choose from exclusive, curated destinations.

Even if you don’t win… a child still does. πŸ’™

πŸ‘‰ Donate or grab your Golden Ticket: https://charity.pledgeit.org/c/a3uo8qqxnk

Who is ready for our March Sturge-Weber Gaming Lounge β€” a fun, relaxed virtual space just for kids and teens ages 12 and...
03/23/2026

Who is ready for our March Sturge-Weber Gaming Lounge β€” a fun, relaxed virtual space just for kids and teens ages 12 and up who are living with Sturge-Weber syndrome and related conditions.

Join this Tuesday's Zoom 7:30 pm - 8:30 pm:
β€’ Bring your favorite game (video, mobile, tabletop, or online)
β€’ Play, chat, and hang out with others who understand their journey
β€’ Make friends who "get it"
β€’ Take a break from doctors, school, and stress β€” and just be kids

There will also be time built in for:
β€’ Talking about life with SWS (if they want to)
β€’ Sharing what they're dealing with at school, at home, or socially
β€’ Supporting each other in a relaxed, judgment-free space

If your child has ever felt alone because of their diagnosis, this is a place where they can belong.

Let's game, connect, and grow β€” together.

https://app.theauxilia.com/registrationEvent/be15f6fc-0cd0-4fd2-9fdb-b9048154f4cb

REMINDER! 🎯 This Saturday, March 21st – Don't miss the Sturge-Weber Syndrome Clinical & Research Roundtable!Join us for ...
03/19/2026

REMINDER! 🎯 This Saturday, March 21st – Don't miss the Sturge-Weber Syndrome Clinical & Research Roundtable!

Join us for an exclusive one-hour session featuring:
βœ“ Dr. Anna Pinto, MD – Emory University
βœ“ Dr. Jeffrey Loeb, MD – University of Illinois Chicago

This interactive forum will explore SWS across the lifespan, covering:
β€’ Clinical care advances
β€’ Emerging research
β€’ Care coordination strategies
β€’ Real-world challenges faced by individuals and families

Whether you're a patient, caregiver, healthcare provider, or researcher, this is your opportunity to ask questions and engage in meaningful discussion with leading experts.

Register now – https://app.theauxilia.com/registrationEvent/3005fb7a-c98c-443f-8846-347e401b235d

Together, we're strengthening clinical-research-community collaboration and advancing care for everyone affected by Sturge-Weber syndrome. See you Saturday! πŸ’œ

Thank you to everyone who shared their St. Patrick's Day celebration photos with us! πŸ€ We love seeing our community come...
03/18/2026

Thank you to everyone who shared their St. Patrick's Day celebration photos with us! πŸ€ We love seeing our community come together and spread the joy. Your pictures made our day brighter!

There once was a day full of cheer,With shamrocks and green far and near,With luck in the air,And joy everywhere,Happy S...
03/17/2026

There once was a day full of cheer,
With shamrocks and green far and near,
With luck in the air,
And joy everywhere,
Happy St. Patrick's Dayβ€”raise a cheer! πŸ€

Happy St. Patrick's Day from the Sturge-Weber Foundation! πŸ€ We want to see how you are celebrating! Share your photos of you in green and show us your beautiful spirit! βœ¨πŸ’š

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

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 likeβ€”united, strong, and unstoppable.

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

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

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