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SWF "What's Your Plan?" Webinar Series

 

 

 

 

 

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Our Mission

The Sturge-Weber Foundation (The SWF) global mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port-Wine Birthmark conditions through tenacious collaboration with clinical partners and pioneers, education, advocacy, research and friendly support. Learn more and get involved.


What's New In Research

Multicenter Research Data of Epilepsy Management in Patients With Sturge-Weber Syndrome

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The Sturge-Weber Foundation (SWF) provides sponsors the opportunity to share information through our public communication sites. SWF does not endorse, prescribe or recommend any products shown in sponsor information. Please consult your doctor for questions regarding any medical information.

Savor and Linger

If summer reminds us of nothing else, it is to savor each bite and to linger in the feast! My son, Derek, LOVES to eat and especially a good BBQ with family and ice cream to fill in the cracks. He also has a wonderful knack to savor and linger in our feast of a lil “chinwag” when we are in a conversation. “Mom, just one more thing I HAVE to tell you!” Oh, did I tell you about…” and he’s off to the races. I truly cherish him and his innate ability to enjoy the moment and savor our time.

The SWF has a dear friend still valiantly facing cancer and she’s an indefatigable warrior if I’ve ever met one! I was searching for some photos the other day and ran across a photo her mom sent years ago when our friend was a little girl. A sweet and innocent looking child peering out of the photo and not knowing what life had in store for her but trusting her family and the SWF would be there for her every step of the way! It once again reminded me to savor the moments being made into memories and linger for as long as I can.

Her photo and Derek remind me that the SWF is more than an online resource or go to stop for some much- needed insight and hope. We have become family over the years and welcomed new members as the years have gone by. We are a bastion of hope and calm amidst the storms we battle…literally AND FIGURATIVELY! We first met our friend in person during a Patient Engagement event in New Orleans and I still get tears in my eyes remembering the laughter we had when we LITERALLY navigated the streets of New Orleans amidst a TORRENTIAL downpour! I truly admire each of you who have had SWS touch your lives as well as the usual day to day life challenges and celebrations. We just know how to cherish each moment and live in the present because the future IS a present.

I hope you have a wonderful rest of the summer! Please send us your photos as you savor your favorite feast and linger as you prolong the moments being made into memories! For a reason, a season, or a lifetime we are here for you…

Faith, Hope and Love,

Karen

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