Tears, Trust, and Tenacity!
The hero is the one in the battle who just won’t quit!
Do you remember the first time you saw your newborn’s birthmark, or discovered your own? That moment likely sparked a whirlwind of emotions, questions, and maybe even tears. For those living with Sturge-Weber syndrome (SWS), or for the healthcare professionals who care for them, the journey is often marked by uncertainty, hope, and resilience.
Many of us, patients, families, and providers, started this path with little knowledge and even fewer answers. Visible birthmarks, hidden complications in the brain or eye, and the unknowns of SWS felt overwhelming. But something remarkable happened as we came together: by sharing our stories and supporting each other, we found hope and strength.
We learned to trust in collaboration. We believed that by working together, we could find answers to our questions and shape a brighter future. Healthcare providers reached out to colleagues for guidance. Families leaned on The Sturge-Weber Foundation (SWF) for resources and referrals. Researchers and clinicians from around the world united, forming the Clinical Care Network (CCN) and the SWF International Research Network (SWFIRN), all in pursuit of better care and understanding.
We realized that progress required more than just determination; it needed critical funding, awareness, and grassroots support. Every volunteer, every dollar, every act of advocacy helped accelerate research and improve treatment and mental health care for those living with SWS and birthmarks.
Tenacity is at the heart of our mission. There are hard days; days filled with tears, frustration, and uncertainty. But there is always a choice: remain stuck, or rise as victors. We choose to fight. We need the whole SWS team to show up. We need patients, families, healthcare workers, researchers, and supporters to stand with us on the front lines.
Since our founding in 1987, countless volunteers have contributed time, resources, and passion. Each effort makes a difference, inspiring newly diagnosed families, fueling research, and moving us closer to a cure.
As we approach the 40th anniversary of The Sturge-Weber Foundation, we invite you to share your experiences, feedback, and hopes for the future. Your voices will help shape the next chapter in our journey and the research we support.
Together, we have transformed what it means to live with SWS and birthmarks. We have built a community grounded in trust, perseverance, and unwavering hope. Our tears—of sadness, frustration, and joy—have united us. Our tenacity continues to drive us forward.
Let’s keep changing the world—one story, one breakthrough, and one act of courage at a time.
Share your story with us here. You never know, your story may be the voice of encouragement one person needs to read today!
With love, faith, and hope,
Karen Ball
CEO and Founder
