The Sturge-Weber Foundation

10/28/2026

🌿 The October 2026 edition of Branching Out is here! 🌿

Our latest quarterly publication from the Sturge-Weber Foundation is now available to read.

This issue highlights the incredible progress happening across our SWS community, including:

🔬 A look at the next chapter of SWS research and the continued work of the Brain Vascular Malformation Consortium (BVMC)

🧬 Research breakthroughs and discoveries that are helping us better understand Sturge-Weber syndrome

💙 Updates from the Foundation, including new leadership and the exciting work ahead

🤝 Community resources and opportunities to connect, including virtual support groups and the SWF Gaming Lounge

📖 Stories from the people who make this community so special — families, clinicians, researchers, and advocates working together to move SWS care and research forward.

From where we've been to where we're going, this issue is a reminder of just how much can happen when our community comes together.

Read the October 2026 edition of Branching Out and stay connected to the latest from SWF. 🌿

👉 Read the full issue: Branching Out — October 2026
https://sturge-weber.org/file_download/inline/082ea097-ae71-42fb-a777-ec1ab206a841

10/27/2026

💙 A Resource for Our Community

For families and caregivers navigating access to care, understanding changes to Medicaid coverage can feel overwhelming. We’re sharing this upcoming webinar as a resource that may be helpful to members of the Sturge-Weber community.

Protecting Access to Care: Understanding Recent U.S. Federal Medicaid Changes

Hosted by Lundbeck US Patient Advocacy, this 25-minute webinar will cover:
• The impact of recent federal Medicaid changes on coverage and access
• Steps families can take to help protect benefits and coverage
• Resources for personalized assistance

📅 Monday, November 9, 2026
⏰ 8:00–8:30 PM ET
💻 Online via Zoom
Register today using the link provided by Lundbeck US Patient Advocacy. https://zoom.us/webinar/register/5617915591290/WN_Jicojq_aT-yA9f-IpR1t2w #/registration

We’re always looking to share resources that can help our community stay informed and connected to support. 💙

10/26/2026

Advocacy starts with sharing our story. 💜

Julia Terrell represented the Sturge-Weber Foundation at the NIH alongside PEDRA, helping bring the Sturge-Weber syndrome story to NIAMS.

We believe awareness and advocacy are powerful tools for our community. Every conversation and every opportunity to share the experiences of those living with Sturge-Weber syndrome helps make sure our community is seen, heard, and represented.

We’re proud to have Julia there advocating for our warriors, families, and the future of Sturge-Weber syndrome.

Together, we can turn awareness into action.

10/25/2026

https://www.facebook.com/share/p/1E8gfa7rwy/?mibextid=wwXIfr

Everyone meet Max!!

Imagine our surprise when we looked out in the crowd at our PA show and seen a face so very familiar smiling back at us.

We’ve had the honor of proudly displaying Max’s incredible smile all across the country this fall as he was picked to represent The Sturge-Weber Foundation . The Sturge-Weber foundation graciously signed on to sponsor our tour bus for the Backroads and Barns Tour and we can’t tell you how awesome it has been to be able to help spread awareness alongside such an outstanding group of people . 

Check them out here & Max, keep on smiling buddy! https://www.facebook.com/share/1Hx8mvJpep/?mibextid=wwXIfr

10/23/2026

🎃👻 Spooky season is officially upon us! 👻🎃

With Halloween just around the corner, we’re taking a little trip down memory lane and sharing some of our Warriors’ Halloween looks from years past! 🧡

From superheroes to princesses, little pumpkins to spooky surprises — our Warriors sure know how to make Halloween extra special! 🕷️🦸‍♀️👑🎃

Now it’s your turn! 👀

What is everyone dressing up as for Halloween this year? Have you already picked out your costume? Or maybe you’re keeping it a surprise… 🤫

Share your costume in the comments — or give us a little sneak peek! 📸

We can’t wait to see all of our Warriors dressed up and ready to trick-or-treat! 🍬🍭

Costumes, candy, and a little spooky cheer — Halloween is almost here! 🎃✨

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?