The Sturge-Weber Foundation

The Sturge-Weber Foundation To improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions. The SWF Objectives are:
To empower individuals with SWS, KT and PWB and their families
To support and refer those affected by SWS, KT and PWB
To act as a clearinghouse of information on SWS, KT and PWB
To educate the general public, the medical profession, and government agencies by disseminating information about SWS, KT and PWB
To facilitate further research on SWS, KT and PWB

Los objectivos del Foundactio de Sturge-Weber:
A facultar a las personas con SWS, KT y PWB y sus familias,
Para apoyar y remitir a los afectados por SWS, KT y PWB
Para actuar como centro de intercambio de información sobre SWS, KT y PWB
Para educar al público en general, la profesión médica, y los organismos gubernamentales mediante la difusión de información acerca de SWS, KT y PWB
Para facilitar la investigación sobre SWS, KT y PWB

SWF's Accomplishments: sturge-weber.org
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Operating as usual

Thank you to all of our sponsors: Coolibar, Qlaris Bio, UCB, and Washington Institute of Dermatologic Laser Surgery. Wit...
04/14/2021

Thank you to all of our sponsors: Coolibar, Qlaris Bio, UCB, and Washington Institute of Dermatologic Laser Surgery. With partnering with our sponsors we can have our SWF Educational Summits, help achieve our goals for the SWF Million Miles Fundraiser, and further our research with SWS.

#ThankYou #Sponsors #SWFMillionMiles #SWF #SWS

04/13/2021

Here are some pictures from SWF CCN, Texas Children's, Million Miles Kick-off party on Saturday. There were 52 attendees ready to walk! Thank you to everyone who came out and participated. Great to see that all of you are getting your steps in for our Million Miles Fundraiser!

Want to get involved and join/start a team? Click the link below to get started.

Link: https://sturge-weber.org/participate/swf-million-miles-for-sturge-weber-syndrome.html

#TexasChildrens #SWFMillionMiles #OneSTEPCloser #SWS

Share the news that EveryLife Foundation for Rare Diseases is pleased to open applications for the second year of the #R...
04/13/2021

Share the news that EveryLife Foundation for Rare Diseases is pleased to open applications for the second year of the #RAREis Scholarship Fund!

Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000 each will be granted to up to 35 recipients for the Fall 2021 semester. Who is eligible? Any rare disease patient pursuing accredited classes at any stage in their life Full-time, part-time or trade school students Non-traditional students (students do NOT need to be pursuing an undergraduate or graduate degree) Deadline: May 7th For more information about the #rareisscholarshipfund click the link below!

Link: https://everylifefoundation.org/rare-scholarship/?eType=EmailBlastContent&eId=b4d4c80f-0e8a-46cd-a946-d4e412db2d7c

#raredisease #SWS #EveryLifeFoundation #SWF

04/12/2021

The Sturge-Weber Foundation is honored to be partnering with UC Irvine to host "The Importance of Nutrition" Event. This event will be presented by UC Irvine Susan Samueli with guest speaker Sherry Schulman.

Description of the Event:
Sherry Schulman will discuss realistic lifestyle modifications to enhance sustainable health and wellbeing through nutrition. This is a great opportunity for caregivers and patients to improve health and quality of life!

Date and Time of Event: April 30th, Friday, at 2:30 pm (EST). This event is free and encourage all to sign up!

Link to Sign Up: https://sturge-weber.org/participate/importance-of-nutrition.html

#UCIrvine #SWF #Nutrition #CAREgivers

04/12/2021

It's Monday Motivation and this week's quote is: "If You Want Something You've Never Had, You Must Be Willing To Do Something You've Never Done" -Thomas Jefferson.

#FitnessMonday #MondayMotivation #MillionMIles #SWF #SWS

Over the years we have had some FUN and unusual ways to raise money for SWF! #ChrisSpice
04/09/2021

Over the years we have had some FUN and unusual ways to raise money for SWF! #ChrisSpice

04/09/2021

The SWF had an amazing Educational Mini Summit over the weekend.

We had over 29 attendees. We had attendees from Israel, India, England, New Zealand, Canada and Romania. A special shout out to our Task Force Leaders Dr. Esteban Fernandez, Dermatology; Dr. Lauren Blieden, Ophthalmology, Dr. Dave Shahani, Neurology and Carol Roethke-Greene RN.

Thank you to everyone who participated and a special thank you to our sponsor and partner UCB.

#EducationalSummit #CCN #UCB #TaskForce #SWF #MillionMiles

Have YOU signed up for The SWF Million Mile Campaign Fundraiser. We encourage everyone to come out and participate (and ...
04/08/2021

Have YOU signed up for The SWF Million Mile Campaign Fundraiser. We encourage everyone to come out and participate (and it’s easy, all you have to do is take some steps)!

The Million Miles Campaign is a fundraiser benefiting the Sturge-Weber Foundation and research initiatives. The duration of the fundraiser is 3 months (April 1st-June 30th, 2021). This is an opportunity for EVERYONE to participate in something bigger than themselves that will ultimately lead to the improvement of life for SWS patients and families.

SWF team captains will build teams across the United States. These teams will consist of patients, family, friends and interested donors. For every step you take it equals to 1 cent. Our hope is to cover one million miles collectively and raise $300,000. As each person takes on their role as a walker, a runner, or cyclist, they are going the distance for SWS.

HOW TO SIGN UP:
This is a two part registration.
1. Visit: https://sturge-weber.org/participate/
2. Follow the instructions listed on the page.
3. Click the JustGiving Link to sign up. After that you can create your own team or sign up under one of the teams listed above!
4. From there, just start walking, cycling, swimming, etc., to get your start on your goal!

Together we can do this, let's take our steps!

#TakeYourStep #MillionMiles #LaceUpStepOut #SWF #SWS #signupnow

04/07/2021

The Sturge-Weber Foundation is honored to be partnering with UC Irvine to host a Mindfulness Event: The Light That Shines Within. This event will be presented by UC Irvine Susan Samueli.

Description of the Event:
There is a light that shines within each of us... a light that bolsters our wellbeing and illuminates our wholeness. Join us as we explore simple, evidence-based practices that cultivate mindfulness and self-compassion in people of all ages. We will end with a Q&A, and share resources to support our continued practice.

Date and Time of Event:
April 29th, Thursday, at 3:00 pm (EST)

Link to Sign Up: http://sturge-weber.org/participate/mindfulness.html

Yesterday, our very own Karen Ball took part in an interview on "The Happy Chat Show". Karen had a lot of fun to hear al...
04/07/2021

Yesterday, our very own Karen Ball took part in an interview on "The Happy Chat Show". Karen had a lot of fun to hear all the wonderful questions, thoughts, and answers.

A little summary of "The Happy Chat Show":

Community Connections Life has created an integrated platform to help promote the lives of adults with disabilities experience “More.” Our goal is to promote success through relationship building and independence. Overcoming entrenched challenges requires vision, creativity, and effort equal to the scope of the problem.

Thank You to "The Happy Chat Show" for having Karen on the show!

#HappyChatShow #SWF #SWS

The Sturge-Weber Foundation is excited to announce that the EveryLife Foundation for Rare Diseases is pleased to open ap...
04/06/2021

The Sturge-Weber Foundation is excited to announce that the EveryLife Foundation for Rare Diseases is pleased to open applications for the second year of the #RAREis Scholarship Fund. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000 each will be granted to up to 35 recipients for the Fall 2021 semester.

Who is eligible?

Any rare disease patient pursuing accredited classes at any stage in their life
Full-time, part-time or trade school students
Non-traditional students (students do NOT need to be pursuing an undergraduate or graduate degree)
Deadline: May 7th

For more information about the #rareisscholarshipfund click the link below!

Link: https://everylifefoundation.org/rare-scholarship/?eType=EmailBlastContent&eId=b4d4c80f-0e8a-46cd-a946-d4e412db2d7c

Here is an article from one of our participants in our Million Miles Fundraiser.  Boston Children's has a great article ...
04/06/2021
Seven ways to help your child embrace the new “normal” for back- to-school| Boston Children's Health Physicians | Boston Children's Hospital

Here is an article from one of our participants in our Million Miles Fundraiser. Boston Children's has a great article on how "To help your child embrace the new “normal” for back- to-school". It's a quick read, check it out.

Link: https://www.childrenshospital.org/bchp/news/back-to-school

#millionmiles #SignUp #bostonchildrenshospital #SWF #SWS #NewsdayTuesday

What will school look like for your child this fall? And how will your family handle it? While it’s normal to be anxious about all the uncertainty, parents can take steps to help children manage their stress and accept the “new normal” that exists.

04/05/2021

Here are some of the top apps to track your steps. You can use Fitbit, myfitnesspal, Pacer, GoogleFit, and many more.

This is a great way to track your progress in our Million Miles Campaign Fundraiser! Need more information about Million Miles or need to sign up, click the link below!

Link: https://sturge-weber.org/participate/

#MillionMiles #CAREtoTakeSteps #SignUp #SWF #SWS

04/05/2021

Every Monday during our Million Miles Campaign Fundraiser, we will post a motivational quote related to fitness or health. Here is this week's Motivational Fitness Monday quote, " The Pain You Feel Today, Will Be The Strength You Feel Tomorrow".

#MotivationalMonday #MillionMiles #FitnessMonday #SWF

The Sturge-Weber Foundation's cover photo
04/01/2021

The Sturge-Weber Foundation's cover photo

OUR BIG ANNOUNCEMENT IS HERE! The SWF is having a Million Mile Campaign Fundraiser. We encourage everyone to come out an...
04/01/2021

OUR BIG ANNOUNCEMENT IS HERE! The SWF is having a Million Mile Campaign Fundraiser. We encourage everyone to come out and participate (and it’s easy, all you have to do is take some steps)!

The Million Miles Campaign is a fundraiser benefitting the Sturge-Weber Foundation and research initiatives. The duration of the fundraiser is 3 months (April 1st-June 30th, 2021). This is an opportunity for EVERYONE to participate in something bigger than themselves that will ultimately lead to the improvement of life for SWS patients and families.

SWF team captains will build teams across the United States. These teams will consist of patients, family, friends and interested donors. For every step you take it equals to 1 cent. Our hope is to cover one million miles collectively and raise $300,000. As each person takes on their role as a walker, a runner, or cyclist, they are going the distance for SWS.

With the funding raised through the Million Miles Campaign, the Foundation will be able to:
1. Provide funding to researchers specifically leading investigations in SWS
2. Provide opportunities for professional collaboration to obtain a better understanding of SWS, best treatment practices, protocols and pharmaceutical therapies
3. Deliver educational information to patients and families on the most up to date medical information regarding treatments, pharmaceuticals, and physicians/ institutions that specialize in SWS treatment
4. Provide a community for SWS patients and families to navigate their individual journey with SWS together.

Medical Institutions that are participating in SWF Million Miles:

NYU Langone- Team Leader Dr. Dan Miles
Seattle Children’s- Team Leader Dr. Catherine Smile-Lefond
University of CA San Francisco-Team Leader Dr. Ilona Frieden
Rady Children’s- Team Leader Dr. Lawrence Eichenfeld
University of Texas- Team Leader Dr. Alice Frigerio
Dell Children’s- Team Leader Dr. Moise Levy
Texas Children’s- Team Leader Dr. Denise Metry
Mayo Clinic Minnesota- Team Leader Dr. Megha Tofellson
Bascom Palmer- Team Leader Dr. Peter Chang
UNC/Duke- Team Leader Dr. Julia Blatt
Cincinnati Children’s- Team Leader Dr. Adrienne Hammill
Nationwide Children’s- Team Leader Dr. Warren Lo
Michigan Children’s- Team Leader Dr. Csaba Juhasz
UIC- Team Leader Dr. Jeffrey Loeb
Lurie Children’s-Team Leader Dr. Carolyn Kiolbasa
Nemours-Team Leader Dr. Steve Falchek
Wills/Jefferson- Team Leader Dr. Jade Price
Boston Children’s- Team Leader Dr. Anna Pinto
Colorado- Team Leader Karen Ball
Cook’s Hospital- Team Leader Dr. Dave Shahani

How To Sign Up:
This is a two part registration.

1. Visit: https://sturge-weber.org/participate/
2. Follow the instructions listed on the page.
3. Click the JustGiving Link to sign up. After that you can create your own team or sign up under one of the teams listed above!
4. From there, just start walking, cycling, swimming, etc., to get your start on your goal!

Together we can do this, let's take our steps!

#TakeYourStep #MillionMiles #LaceUpStepOut #SWF #SWS

The Sturge-Weber Foundation's cover photo
04/01/2021

The Sturge-Weber Foundation's cover photo

03/31/2021
Big Announcement Tomorrow!

The SWF has something new, big, and exciting coming tomorrow (April 1st)! We don't want to spoil the surprise so stay tuned and no this isn't an April Fools joke! #SWF #Surprise #ComingSoon #CARE #AprilFirst

Check out this study on Lasers, Birthmarks, and Sturge-Weber Syndrome: A Pilot Survey. This survey is aimed to develop a...
03/30/2021
Lasers, Birthmarks, and Sturge‐Weber Syndrome: A Pilot Survey

Check out this study on Lasers, Birthmarks, and Sturge-Weber Syndrome: A Pilot Survey. This survey is aimed to develop a survey to understand patient perspectives on laser therapy and subsequent behaviors while focusing on three elements of the health belief model: perceived susceptibility, perceived benefits, and perceived barriers. Thank you to Sara Sabeti BS, Kelly J. Tackett BS, Karen L. Ball BS, Julia Terrell BS, Kristen M. Kelly MD, and Craig Burkhart MS, MPH, MD, for working on this research study!

#SWF #Birthmarks #SWS #CCNs #SWSStudy

Background and Objectives There is limited or no data on the experience of patients with Sturge‐Weber Syndrome (SWS) and/or their parents who seek out laser treatments for their port‐wine birthmark ...

03/29/2021

It's not too late to sign up for The SWF Educational Mini Summit, which is in 5 days!
The Sturge-Weber Foundation provides this free event to all interested parties to learn more about Sturge-Weber Syndrome and related conditions. Education Days are 3 hour virtual seminars (12:00-3:00 PM, EST). Next Education Day is April 3rd. Sign up now!

Link To Sign Up: https://sturge-weber.org/participate/swf-education-days.html

We are able to have our Mini Summits thanks to our sponsors UCB and Ship Bottom Brewery!

#SWF #EducationDay #UCB #ShipBottomBrewery

03/29/2021

It's the last Monday in March! Here is this week's Motivational Monday quote, "Make Your Life A MasterPiece; Imagine No Limitations on What You Can Be, Have, or Do." -Brian Tracy.

#MotivationalMonday #Monday #SWF

03/26/2021

The SWF has something new, big, and exciting coming soon in 5 days! We don't want to spoil the surprise, so stay tuned and make sure to follow us so you don't miss out. #SWF #Surprise #ComingSoon #CARE #AprilFirst

03/26/2021

It's Friday, here is some end of the week motivation! "The Harder You Work For Something, The Greater You’ll Feel When You Achieve It.".

#FridayMotivation #SWF #EndoftheWeek #HappyFriday

03/25/2021

Did you know the SWF has a registry? A registry is a place to store detailed information about affected individuals with a specific disease or syndrome. The Sturge-Weber Foundation has been storing information shared by individuals since its inception in 1987. If you want to join our registry, just click on the link below and sign up!

Link: https://swsregistry.patientcrossroads.org/index.php?option=com_content&view=article&id=259&Itemid=358&lang=en

#registry #SWF #SignUpToday #SWSWarrior

COVID-19 vaccines are new, and it’s normal to for people to have questions about them. The sheer amount of information a...
03/24/2021
COVID-19 and Your Health

COVID-19 vaccines are new, and it’s normal to for people to have questions about them. The sheer amount of information and misinformation about COVID-19 vaccines can be overwhelming to anyone. You can help family and friends by listening without judgement and identifying the root of their concerns. Here is a great article from the CDC about how to talk to friends and loved ones about the Covid-19 vaccine and help them with their concerns.

#Covid19 #CARE #SWF #StoptheSpread #CDC

Symptoms, testing, what to do if sick, daily activities, and more.

03/23/2021

Spring is here, perfect time to purchase some SWF apparel. We have a selection of t-shirts, leggings, and masks. When you make a purchase, 5% of your purchase is donated to the Sturge-Weber Foundation. Shop today!

Link: https://the-official-swf-store.creator-spring.com/

#SWFOfficialStore #SWF #SWS

03/22/2021

It's not only Motivational Monday, but it is National Women's History Month. "Every Woman's Success Should Be An Inspiration To Another. We're Strongest When We Cheer Each Other On."— Serena Williams.

#MondayMotivation #SWF #Women'sHistoryMonth

03/19/2021

Our third SWF Family Game Night is right around the corner! Join us March 31st to play Bingo. We welcome all families to particpate. All of the game nights start at 6:00-7:00pm (CST). We hope to see all of you there!

Link to Sign Up: https://sturge-weber.org/participate/swf-family-game-night.html

#SWF #GameNight #FamilyNight #JoinUs

03/19/2021

It's Friday, here is some end of the week motivation! "Challenge Yourself To Let Everyday Be a Friday. Give Yourself Permission To Be Happy Every Day." — Joel Osteen.

#FridayMotivation #SWF #EndoftheWeek #HappyFriday

Have questions or need more information about SWS? The Sturge-Weber Foundation has a wealth of great resources, and tool...
03/18/2021
The Sturge-Weber Foundation : For Patients : Educational Resources : Educational Documents

Have questions or need more information about SWS? The Sturge-Weber Foundation has a wealth of great resources, and tools to help you have improved quality of life throughout your journey with Sturge-Weber syndrome and related birthmark conditions. Our resource materials will educate you on various topics, answer any questions you may have and inform you about the latest news. Visit the link to our website to see all of our resources!

#SWF #PWB #EducationalResources #sturgewebersyndrome

Link: https://sturge-weber.org/for-patients/educational-resources/educational-documents.html

The Sturge-Weber Foundation has a wealth of great resources, and tools to help you have improved quality of lfe throughout your journey with Sturge-Weber syndrome and related birthmark conditions. Our resource materials will educate you on various topics, answer any questions you may have and inform...

Address

12345 Jones Road Suite 125
Houston, TX
77070

General information

The SWF is known for their personalized support and care utilizing one to one comprehensive programs and referral networks. Individual Opinions are NOT Medical Advice please seek professional advice from SWF Clinical Care Networks or your medical team. The SWF is a global leader in facilitating research and promoting partnerships that benefit all individuals impacted by a port wine birthmark or related condition. This is made possible by the rich and diverse partnerships which evolve by mutual sharing of like interests!

Telephone

+19738954445

Products

Sturge-Weber Syndrome Textbook, Sturge-Weber Syndrome Resource Guide, Webster Bear and much more by contacting the SWF office at [email protected]. Introducing our company story to find even more goodies is https://the-official-swf-store.creator-spring.com

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.

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Comments

I am concerned about getting the covid vaccine. As someone who has sws, I am afraid about having a seizure or something worse. Part of my birthmark is in my head. Therefore I do not feel safe to get the vaccine. Does anyone else feel this way?
Hello i do also have same problem. Can i get some help please.
hello maam i am here to ask some help for my baby.she is 3years old and diagnosed of sturge wabwr syndrome..set cannot set and stand alone,she dont eat rice or any solid food.she take milk and cerelac only..i am asking help for her mrieeg and her meantinance medecine for her siezure..we cant efford to pay all of the expences please maam i am begging you maam please help my baby for all who want to help here the venmo i use @mamasalas424
I got my Sturge Weber Foundation leggings for Christmas and I LOOOOOVE them. So comfy and cute!
I have a boy 13 years old he has Sturge Weber syndrom,Port Wine Stain,Glaucoma,Hemangioma and Epilepsy...This October has a terrible week he started with seizure for more de 5 minute,never has more the a minute but this time was terrible.When we arrived to the hospital he got 2 more in the ambulance and he stay at hospital for a week with total seizures 86 .Thank to the Dr Anna Comi because she supported us and Dr Linda.... Please any recommendation I appreciate.
It sure is a blessing to have you all out there. For now, since he is so little we carry him through these trials and discoveries, but as I read your posts and testimonies I am encouraged that one day we will be able to walk with him through them, together. Thank you for being brave and sharing your experiences. One day I hope we will be able to do the same for others.
My brother has SWS, he is 68 years old. He has had atonic seizures from time to time. Recently he has been having them more frequently, which I believe is related to life changes/stress. He hasn’t seen a neurologist in a while, so I took him to see one in his hometown. He didn’t feel he needed to run any more tests, but wants him to try taking a seizure drug, lamictal. Does anyone here have any experience/knowledge of the side affects? We were told about headaches and a very serious/life threatening rash... which concerns me. I researching, but would like this groups thoughts because I trust this group. Thanks in advance!!!
Seizure free for 1 year!!!
Our grandson, Jeremy Huston is a 2020 graduate and we are soooo proud of him. Jeremy will be coming back to live with us for a bit this Fall and we are so excited. Hard work does pay off.
Hello SWF family! We are moving, with our 19 year old daughter, from VA to Milwaukee, WI soon! Any members in that area? Any advice on excellent doctors? Any advice at all? Many thanks!!
May is Vascular Birthmarks, Anomalies and Syndromes Month of Awareness!!!!! Challenge from Russia🤝 💖💖💖