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.
(1)

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 21st Birthday, Patrick! 🎉Today we celebrate YOU – a true warrior and inspiration to our entire SWF community.At ju...
04/23/2026

Happy 21st Birthday, Patrick! 🎉

Today we celebrate YOU – a true warrior and inspiration to our entire SWF community.

At just 10 months old, you were diagnosed with Sturge-Weber syndrome and epilepsy. At 5, you suffered a stroke that left you paralyzed on your left side. Doctors said you might never walk or talk again. But you fought back – and you proved them wrong.

Despite glaucoma, vision loss, and every obstacle in your way, you've become the remarkable man you are today. And we couldn't be prouder of you.

Recently, you made captain of your local pan-disability football team AND became an assistant coach. That's the Patrick we know – someone who doesn't just overcome challenges, he lifts others up along the way.

Your resilience, your heart, and your spirit remind us all what's possible when you refuse to give up.

Happy 21st, Patrick. Here's to celebrating YOU and all the incredible things ahead. 🎂💚

We are celebrating BIG! Happy 1st birthday, John Lucas!Please join us in wishing John Lucas a beautiful, happy birthday ...
04/22/2026

We are celebrating BIG! Happy 1st birthday, John Lucas!

Please join us in wishing John Lucas a beautiful, happy birthday as he celebrates this very special milestone—one whole year of smiles, snuggles, giggles, and so much love.

You are a little warrior, John Lucas, and your determination is already amazing. May your day be filled with joy, cake, and all the people who adore you most.

Happy Birthday, John Lucas—here’s to an amazing year ahead!

We’re 10 days away from the Month of Awareness! You know what THAT means…We’re hosting a Fireside Chat with our Founder ...
04/21/2026

We’re 10 days away from the Month of Awareness! You know what THAT means…

We’re hosting a Fireside Chat with our Founder & CEO, Karen Ball!

Wednesday, April 29, 2026
7:00–8:00 PM
Grab a treat and a drink and join Karen for some virtual laughter (and a great conversation).

Register here: https://app.theauxilia.com/registrationEvent/65d17737-a6fc-4798-98d1-c8c2ebd750c8

We hope to see you there!

Happy Monday, Warriors! 🎓✨Today we're celebrating an incredible milestone in our community. Amy Vercauteren Hefty's warr...
04/20/2026

Happy Monday, Warriors! 🎓✨

Today we're celebrating an incredible milestone in our community. Amy Vercauteren Hefty's warrior is headed to college in the fall!

There were many years when this dream seemed impossible. But look at her now – thriving and ready to take on the world. This is what the Sturge-Weber Foundation is all about: believing in the possibilities and celebrating every victory, big and small.

We are so proud of you!

Meet Ezra! 🎉 We're celebrating this incredible milestone as he approaches 6 months post-op (and hopefully 6 months seizu...
04/16/2026

Meet Ezra! 🎉 We're celebrating this incredible milestone as he approaches 6 months post-op (and hopefully 6 months seizure-free!). He can't wait for his big brother to be home for summer break. Pure joy! 💙

Thank you for sharing your story, Ezra. Your strength inspires us all.

Happy Wednesday! 💜We're celebrating a beautiful milestone today: Morgan has been almost 2 1/2 years seizure-free!Morgan ...
04/15/2026

Happy Wednesday! 💜

We're celebrating a beautiful milestone today: Morgan has been almost 2 1/2 years seizure-free!

Morgan continues to work hard with ABA therapy, OT, PT, and speech. She's spending time seeking out new experiences and friends to help her grow. At 16 now, she just wants to do all the teen things—and we couldn't be happier for her!

This is what strength and resilience look like. 💪

Let's all show support and cheer on Morgan!

Join us for the Sturge-Weber Syndrome Family Education Day! 🎓This Saturday, May 2nd, 2026 (9:00 am - 1:00 pm)The Inn at ...
04/14/2026

Join us for the Sturge-Weber Syndrome Family Education Day! 🎓

This Saturday, May 2nd, 2026 (9:00 am - 1:00 pm)
The Inn at Longwood Medical, Boston, MA

Connect with Boston Children's Hospital clinicians and researchers working on all aspects of Sturge-Weber Syndrome. We'll be covering mental health, new technologies in neuroimaging, treatments for port-wine stains, and more.

Plus, we're welcoming back Dr. Anna Pinto!

Registration begins at 8:00 am.

Register here: https://app.smartsheet.com/b/form/019cf71acfd0749aae252692824e5f82

We're halfway through April, and we're counting down the days! 🗓️ May is Sturge-Weber Syndrome Awareness Month, and we c...
04/13/2026

We're halfway through April, and we're counting down the days! 🗓️ May is Sturge-Weber Syndrome Awareness Month, and we can't wait to shine a light on our incredible community.

Get ready to celebrate the warriors, caregivers, and families who inspire us every single day. May is YOUR month to be seen, heard, and celebrated.

What are you most excited to share this May? Drop a comment below! 💜

We are still so overjoyed that the Sturge-Weber Foundation has all of these incredible sponsors who supported us at Reun...
04/10/2026

We are still so overjoyed that the Sturge-Weber Foundation has all of these incredible sponsors who supported us at Reunion of Champions and beyond! 🙌

A heartfelt thank you to our amazing partners:

🔴 RUBY SPONSOR: Sofwave

💎 SAPPHIRE SPONSORS: Acclaro, Capital Laser & Skin Care, Candela, Lumenis, Sciton

💚 EMERALD SPONSORS: Accure, Colorado Skin & Vein And a special thanks to Roy Geronemus, MD, our Master of Ceremony.

Your generosity and partnership help us make true impact in the rare disease community. We couldn't do this without you! ❤️

Reminder: SWF Caregiver Connect is TODAY! 💜Parents, caregivers, and family members are invited to join our monthly Careg...
04/09/2026

Reminder: SWF Caregiver Connect is TODAY! 💜

Parents, caregivers, and family members are invited to join our monthly Caregiver Connect — a supportive virtual space to connect with others who understand the journey of caring for someone with Sturge-Weber syndrome and related conditions.

📅 April 9TH
🕢 7:30–8:30 PM EST

🔗 Register here: https://app.theauxilia.com/registrationEvent/6292fc40-6edd-496f-b889-e0db434cabf7

A huge thank you to our amazing student volunteers who helped make our Reunion of Champions fundraiser such a success! 🙌...
04/07/2026

A huge thank you to our amazing student volunteers who helped make our Reunion of Champions fundraiser such a success! 🙌 Your dedication, energy, and kindness made all the difference. We are so grateful for your support and everything you contributed to making this event special. Thank you! 💙

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

Alerts

Be the first to know and let us send you an email when The Sturge-Weber Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Featured

Share