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The Storm of Life

Who We Are

Whipping or Whispering Winds…the Storms of Life!

Whipping or Whispering Winds…the Storms of Life!

This view I’m sharing with you has solved a lot of the world’s problems, seen many a tear fall down our faces in joy and sorrow, and put up with some of the shaggiest of dog stories you’ve ever heard! I was sitting on my parent’s front deck contemplating this awesome view when a big wind whipped up through the lodgepole pines. My mom commented that they can get some awful windstorms to come through that make the pines REALLY whip around to and fro and then my dad made an interesting comment. He said, “Kar, the winds do come in fast and furious and you see all the trees help disperse the wind and make the impact less on all of them”.  I can tell you at 90 years of age he’s seen a LOT of wind in his time both literally and figuratively! That’s why we lovingly refer to him as M.O.O. (Mighty Omnipotent One).

Our SWF members and partners are the trees that help all of us disperse the fast and furious winds Sturge-Weber syndrome can send our way. Some of us face harsher storms in life depending on the reason or season. I know, like the winds whipping through those lodgepole pines, you make each windstorm easier to bear because you care and share all your wisdom with each other. Thank you for watching out for each other and encouraging one another either online, via email, or by phone. Together we are surviving deep worries and doing amazing things! Myla’s Mission is the fiscal year kick-off fundraising event and while virtual this year ya’ll are doing an AWESOME job!

Exciting news! Because of all your financial and volunteer support, the SWF fostered and funded new researchers who have gone on to receive NIH grants to investigate SWS in zebrafish, mice and to research 2 new compounds! The pace of discovery will exponentially increase once the zebrafish and mice develop…compounds can be tested, and pathways and proteins too. While Covid-19 has put a storm in our path, we have all weathered it with grace and fortitude with valuable support as each area got hit with whipping or whispering winds of change! Y’all hang in there and let’s look forward to more exciting news and opportunities to be together again in person. Be safe and be well!

Faith, Hope, and Love,