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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.

02/20/2026

Your Weekend Checklist for Hope ✨
☐ Connect with our warrior community—you inspire each other
☐ Read stories of resilience that will lift your spirit
☐ Discover resources designed to empower your journey
☐ Explore events where you'll find your people
☐ Share our mission with someone who needs to know they're not alone
☐ Celebrate how far you've come—you are stronger than you know
☐ Plant seeds of hope for the future by joining our legacy

This weekend, remember: You are a warrior. Your strength matters. Your story matters. Together, we light the way forward. 🔥💛

Be the torch. Be the light.

Visit: sturge-weber.org to discover your path forward.

02/19/2026

🎉 NEW Digital Branching Out is here!

Dive into our latest edition and meet the incredible Reunion of Champions honorees who are making a difference in the vascular birthmark community.

Plus, get all the details on the 2026 SWF Family Reunion coming to San Antonio and discover what's happening next in our community.

👉 Read the full issue: https://sturge-weber.org/for-patients/branching-out.html

Don't miss out—click the link to explore! 📖

02/18/2026

Meet our Reunion of Champions honoree: Paul M. Friedman, MD 🏆
Dr. Friedman is a board-certified dermatologist and director of Dermatology & Laser Surgery Center of Houston.

His career is marked by extraordinary achievements:
✨ Leon Goldman Memorial Award recipient (2019 ASLMS Annual Conference)
✨ Named America's Best Cosmetic Dermatologist by Newsweek (2022 & 2023)
✨ Physician of the Year by Medscape (2022) and The Vascular Birthmarks Foundation (2022)
✨ Texas Super Doctors award for 10 consecutive years
✨ Castle Connolly Top Doctors Hall of Fame honoree
✨ Former President of the American Society for Laser Medicine & Surgery (ASLMS)

Dr. Friedman is a clinical assistant professor at UT Medical School and Weill Cornell Medical College, and serves as fellowship director for multiple prestigious dermatology programs including MD Anderson Cancer Center.

His dedication to advancing dermatologic surgery, laser medicine, and patient care has made him a leader in his field and an inspiration to the next generation of physicians.
We're honored to celebrate Dr. Friedman as a Reunion of Champions honoree! 🎉Click here for all details! https://sturge-weber.org/for-professionals/reunion-of-champions.html

02/17/2026

A huge thank you to all of our generous sponsors making the Reunion of Champions (ROC) 2026 possible!

Your support directly funds Sturge-Weber syndrome research, education, awareness, and patient/caregiver support. We're so grateful for your partnership as we celebrate this year's honorees:

ROC Honoree: Paul M. Friedman, MD
Legacy Leader Honoree: Brian Biesman, MD, FACS
Master of Ceremonies: Roy Geronemus, MD

Join us Friday, March 27, 2026 at the Downtown Aquarium in Denver, CO to celebrate together!

Click here to purchase tickets! https://app.theauxilia.com/registrationEvent/04ec8b07-5737-41ae-b7f8-bed6faac871d

Thank you for making a difference in the Sturge-Weber community.

02/13/2026

Happy Friday! 🎮💕 Any fun plans this Valentine's weekend?

Don't forget, we have TWO more amazing events this month:

📅 Monday, February 16th - Be the Torch. Be the Life.
🎮 Monday, February 24th - Gaming Lounge at 7:30pm

Click here to register! https://sturge-weber.org/events/events.html

02/11/2026

Seizures do not only happen at home. In public settings, a person having a seizure may not be able to communicate. Medical IDs and digital Seizure Action Plans help others respond correctly.

Click here to review Seizure Action Plan templates and continue to help us raise awareness. https://seizureactionplans.org/sap-examples/

02/10/2026

This week is Seizure Action Plan Awareness Week! 🎯

A seizure action plan is your roadmap to preparedness and clear communication with your care team. These templates make it easier to create a plan that works for you and your healthcare provider.

Ready to get started? Select the seizure action plan template that works best for you.

Click the link below to explore your options and take the next step in your seizure preparedness journey. https://seizureactionplans.org/sap-examples/

Once completed, your plan should be:
✓ Reviewed regularly
✓ Updated when medications or seizure patterns change
✓ Shared with anyone responsible for care or supervision

02/09/2026

Join us for Seizure Action Plan Awareness Week, Feb 9-16! 🧠

A seizure is a medical emergency. A Seizure Action Plan (SAP) is lifesaving—it contains tailored guidelines on how to respond during a seizure, helping others recognize what's happening and take the right steps to keep someone safe.

For those living with Sturge Weber Syndrome and anyone managing seizure disorders, we're sharing resources to help you create a plan that works for you.

Learn more & access templates: https://seizureactionplans.org/sap-examples/

Together, we can spread awareness and save lives. 💙

02/06/2026

Happy Friday!

At the Sturge-Weber Foundation, we love celebrating milestones—big and small—because every one is a reminder of strength and community.

We were just sent the sweetest photo of one of our SWF Warriors celebrating their 1st birthday. Join us in sending lots of love and happy birthday wishes to this little one.

Now we’d love to celebrate with you, too: what milestone or win are you celebrating lately?
Share it in the comments. Share your photos! We want to cheer YOU on!

02/04/2026

New research published on PubMed: Glaucoma Management in Sturge-Weber Syndrome Using the Delphi Process.

A panel of North American glaucoma experts reviewed screening, diagnosis, and treatment approaches for glaucoma in SWS and identified areas of consensus to help improve care.

Key takeaways:
*Babies with a facial port-wine birthmark should be assessed for glaucoma within the first month of life
*Closer screening may be needed with higher-risk features (bilateral eyelid involvement, choroidal hemangioma, signs of elevated episcleral venous pressure)
*In children ≥4 years, medications are often considered first
*In children

02/03/2026

Celebrate Impact. Honor Leadership. Plant Seeds of Hope. 🌱

The Reunion of Champions (ROC) is back—our yearly fundraising kick-off event supporting Sturge-Weber syndrome research, education, awareness, and patient/caregiver support.

This year, we're thrilled to celebrate Dr. Paul M. Friedman as our ROC Honoree and honor Dr. Brian Biesman, MD, FACS as our Legacy Leader. These are the visionaries, the warriors, the passionate champions inspiring hope for generations to come.

Join us for an unforgettable evening with Master of Ceremonies Dr. Roy Geronemus, MD.

📍 Downtown Aquarium, Denver, CO
Friday, March 27, 2026

Ready to be part of the impact? Register, purchase your ticket, or become a sponsor:
https://app.theauxilia.com/registrationEvent/04ec8b07-5737-41ae-b7f8-bed6faac871d

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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