The Sturge-Weber Foundation
@SturgeWeber
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Embracing our uniqueness. We may be rare, but we're also one in a million! Awareness and support for those living with SWS, KTS, PWB, Glaucoma, Seizures.
Aurora, CO USA
Joined July 2009
🛑Fact: a port-wine stain isn't always an indicator of Sturge-Weber syndrome. Listen to Carley and Sydney explain it. 🌟 🌟. #raredisease #portwinestain #birthmark #sturgewebersyndrome
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🔍 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
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Save the date for #RareDiseaseDay on February 28! #ShowYourStripes 🦓. @RareRevolutionM @RareDiseases . #SturgeWeberSyndrome #KlippelTrenaunaySyndrome #SturgeWeberStrong #Glaucoma #PortWineStain #PortWineBirthmark #SturgeWeberWarrior #Epilepsy
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Expert Roundtable in Glaucoma. 📆 January 25, 2025.⏰ 12:00 pm - 1:00 pm EST.💻Zoom.👉 👁 Alex Levin, M.D., , Pediatric Ophthalmologist, Wills Eye Hospital @wills_eye. Sponsor: @UCB_usa. #GlaucomaAwarenessMonth #glaucoma
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🌟 Calling all Dermatologist Professionals! Let's come together for something special 👏. Sponsorship and registration:.👉 Sponsors: @sofwave .@sciton @Capital_Laser . #Dermatology #AADMember #ReunionofChampions #SturgeWeberAwareness #DermFellow
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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). #síndromedeSturgeWeber #neurología #manchadenacimiento #convulsiones #SíndromedeKlippelTrenaunay
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Rare Diseases is recruiting individuals from your rare disease communities, patients and caregivers, for a study to identify barriers. Check it out below!. #ResearchStudies #RareDiseaseResearch #SturgeWeberSyndrome
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READ "The First Choice in Treatment for Young Children with Port Wine Birthmarks" by ASLMS. #PortWineBirthmarks #PortWineStain #Dermatology #BirthmarkTreatment
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Our mental health chats are back! 📷 . 📷 Visit for all the details. We hope to see you at one or all of The SWF virtual events. #SturgeWeberEvents #SturgeWeberWarriors #SturgeweberStrong #Seizures #Birthmarks #Glaucoma
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"Mackenzie's mom and dad share details about her medical condition and surgeries, and how having a Magical Dream through @SunFound and Sunshine Foundation Dream Village impacted their family." Watch the full video on YouTube. #SturgeWeber
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Our mental health chats are baaaaack! 🥳 And more events are coming this fall! Stay tuned–it's kind of a secret. 🤫. 😁 for all the details. We hope to see you at one or all of The SWF virtual events. #SturgeWeberEvents#Seizures #Birthmarks #Glaucoma
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Calling all #Neurologists and #SturgeWeberWarriors! Join us for our virtual Ask the Experts chat on October 12, 2024, and ask the doctors anything!. 👉 Thank you to our sponsor: @ucb_news
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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. 🦋 #sturgeweberevents #sturgewebersyndrome #portwinebirthmarks #neurology #eyedisease
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You have dermatology questions? Our experts have answers! . 👉🏼 🙌🏼 Sponsor @ucb_news. #sturgewebersyndrome #portwinebirthmarks #dermatology #dermatologyquestions #portwinestain
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.@RepPettersen @SenatorHick @SenatorBennet 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 @TheArcUS.
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We're just 18 days away from our "Ask the Experts" chat on Dermatology, September 14th!.Panelists:.• Esteban Fernandez.• Megha Tollefson.• Lisa Arkin.Sponsored by: @UCBBiopharma.#PortWineBirthmark #SturgeWeberSyndrome #Dermatology #VascularBirthmark
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We make research happen!. ✅ Fostering Research Grants with @NIH .✅ Write Grants with the BVMC @rarediseasesnet.✅ Collaborate with Dr. Anna Pinto and Dr. Anne Comi. @NIH @BostonChildrens. #Research #SturgeWeberSyndrome #SturgeWeberResearch #GNAQGene
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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.📷 #DermatologyExperts #PortWineStain #StrurgeWeber #Birthmarks
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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: 📷. #SturgeWeberSyndrome
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We are happy to share this back-to-school Power Hour chat hosted by @PESAlliance! . 👉🏼. #Epilepsy #IEP #BackToSchool #Disabilities
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RT @FaceEqualityInt: Important words and tips on allyship from Chelsey Peat, #FaceEquality advocate. Read more about Chelsey's journey with….
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