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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.


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Love in the Time of Corona

Love in the Time of Corona

Well, this pandemic has been around long enough and generated fear with all the hype on many fronts. Don’t get me wrong caution IS a good thing and in moderation otherwise the ad nauseum 24 7 newsfeed will create anxiety and much more. Let’s put it in perspective!

Do you recall the moment your child was born with Sturge-Weber syndrome (SWS) or a Port Wine Birthmark? I do. VIVIDLY! Our world started spinning out of control because back then we had no clue what caused the birthmark or SWS. I’m willing to bet many of you can recall too. In light of the severity of all that SWS can bring with its diagnosis, I hope you have been able to put this time of Corona in perspective and live in gratitude. I know weird to say gratitude and I’m not exactly a Polly Anna but I DO try my best to live in joy and gratitude every day.

Think about it…SWS or Coronavirus or any other “crisis” can rob each of us if we let it! Sure there are moments in a crisis that make us paralyzed with fear.  I believe we need to take a deep breath and exhale through those moments. Get to the other side…focus on love. As the media hype ramps up, I can’t help but think about those of you getting your child ready for yet another glaucoma surgery, a brain surgery or trek to rehab. You know what real crisis is AND how to manage it!

I have a friend that has basically been quarantined off and on for over a year now due to his cancer treatments. Doug and Pat stay optimistic and live in love and faith. They and you remind me…this too shall pass and we only have THIS day to make a memory and once the sun goes down we need to wake up and make more. You are best equipped to handle this time of Coronavirus because SWS has taught you how to be a warrior and keep on fighting.

Hang in there with all the school closings and social distancing but please don’t hoard! This too shall pass. We will remember the loving acts of kindness and support that will see us through just as you and those around you have been doing with any SWS related surgery or crisis. The SWF and I will be here for you in good times and in bad as always…be well and love one another!