Our new Pass the Torch video is now Live on our YouTube channel! This inspirational video includes all our Torchbearers and the Conference Torchbearers running up the Rocky Steps in Philadelphia! 📷 Watch it here: youtube.com/watch?v=qdlGFJ… 📷 #SturgeWeberSyndrome

Ask the Experts is back! Join us on September 14, 2024, at 12:00 pm - 1:00 pm EST for The SWF our Dermatology Roundtable. • Esteban Fernandez, MD • Megha Tollefson, MD, • Lisa Arkin, MD 📷 sturge-weber.org/events/ask-the… #DermatologyExperts #PortWineStain #StrurgeWeber #Birthmarks

We make research happen! ✅ Fostering Research Grants with NIH ✅ Write Grants with the BVMC Rare Diseases Clinical Research Network ✅ Collaborate with Dr. Anna Pinto and Dr. Anne Comi. NIH Boston Children's #Research #SturgeWeberSyndrome #SturgeWeberResearch #GNAQGene

We're just 18 days away from our "Ask the Experts" chat on Dermatology, September 14th! Panelists: • Esteban Fernandez • Megha Tollefson • Lisa Arkin sturge-weber.org/events/ask-the… Sponsored by: @UCBBiopharma #PortWineBirthmark #SturgeWeberSyndrome #Dermatology #VascularBirthmark

.U.S. Rep. Brittany Pettersen Senator John Hickenlooper Michael Bennet please co-sponsor the SSI Savings Penalty Elimination Act (S.2767/H.R.5408). Since 1989, the #SSI asset limit has not been raised, forcing people w/ disabilities into poverty. #UpdateSSI The Arc of the United States

You have dermatology questions? Our experts have answers! 👉🏼 sturge-weber.org/events/ask-the… 🙌🏼 Sponsor UCB News #sturgewebersyndrome #portwinebirthmarks #dermatology #dermatologyquestions #portwinestain

The SWF and @ucirvine invite you to this virtual mini-summit with UC Irvine. Learn, meet the team, and get your questions answered by the experts. @ucirvine 🦋 sturge-weber.org/events/uc-irvi… #sturgeweberevents #sturgewebersyndrome #portwinebirthmarks #neurology #eyedisease

Calling all #Neurologists and #SturgeWeberWarriors! Join us for our virtual Ask the Experts chat on October 12, 2024, and ask the doctors anything! 👉 sturge-weber.org/events/ask-the… Thank you to our sponsor: UCB News

Our mental health chats are baaaaack! 🥳 And more events are coming this fall! Stay tuned–it's kind of a secret. 🤫 😁 sturge-weber.org/events for all the details. We hope to see you at one or all of The SWF virtual events. #SturgeWeberEvents#Seizures #Birthmarks #Glaucoma

"Mackenzie's mom and dad share details about her medical condition and surgeries, and how having a Magical Dream through Sunshine Foundation and Sunshine Foundation Dream Village impacted their family." Watch the full video on YouTube. youtube.com/watch?v=4UjUA_… #SturgeWeber

Our mental health chats are back! 📷 📷 Visit sturge-weber.org/events for all the details. We hope to see you at one or all of The SWF virtual events. #SturgeWeberEvents #SturgeWeberWarriors #SturgeweberStrong #Seizures #Birthmarks #Glaucoma

READ "The First Choice in Treatment for Young Children with Port Wine Birthmarks" by ASLMS aslms.org/about-aslms/me… #PortWineBirthmarks #PortWineStain #Dermatology #BirthmarkTreatment

Rare Diseases is recruiting individuals from your rare disease communities, patients and caregivers, for a study to identify barriers. Check it out below! rc.rarediseasesnetwork.org/surveys/?s=CH3… #ResearchStudies #RareDiseaseResearch #SturgeWeberSyndrome

Chat en español: en vivo desde Chile Spanish Chat: Live from Chile 📆 14 de enero de 2025 ⏰ 7:00 p. m. (GMT-3) ⏰ 5:00 p. m. (EST) sturge-weber.org/events/spanish… #síndromedeSturgeWeber #neurología #manchadenacimiento #convulsiones #SíndromedeKlippelTrenaunay

🌟 Calling all Dermatologist Professionals! Let's come together for something special 👏 Sponsorship and registration: 👉 tinyurl.com/ROCFireAndIce Sponsors: Sofwave Sciton Inc. Capital Skin Laser #Dermatology #AADMember #ReunionofChampions #SturgeWeberAwareness #DermFellow

Expert Roundtable in Glaucoma. 📆 January 25, 2025 ⏰ 12:00 pm - 1:00 pm EST 💻Zoom 👉 sturge-weber.org/events/ 👁 Alex Levin, M.D., M.H.Sc., Pediatric Ophthalmologist, Wills Eye Hospital @wills_eye Sponsor: @UCB_usa #GlaucomaAwarenessMonth #glaucoma

Save the date for #RareDiseaseDay on February 28! #ShowYourStripes 🦓 RARE Revolution Magazine® National Organization for Rare Disorders (NORD) #SturgeWeberSyndrome #KlippelTrenaunaySyndrome #SturgeWeberStrong #Glaucoma #PortWineStain #PortWineBirthmark #SturgeWeberWarrior #Epilepsy

🔍 Understanding Sturge-Weber Syndrome. SWS is characterized by three main features: 1️⃣ Port-wine birthmark (facial) 2️⃣ Neurological conditions (seizures, headaches) 3️⃣ Eye complications (glaucoma) Learn more about SWS types and symptoms at sturge-weber.org

Together with our international counterparts we would like to introduce Sturge Weber International Day! #sturgeweberuk #sturgeweber #sturgewebersyndrome #sturgeweberstrong #sws #swfwarrior

Today, we pause to honor the lives lost and the heroes who emerged on September 11th. We will never forget the strength and unity shown in the face of tragedy.  #NeverForget #September11 #Remembrance