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All About Sturge-Weber Awareness

myla's mission

My Vlog
54 DAYS TO THE EVENT
May 17, 2025, 8:00 AM
Lake Santee
Make a difference! Myla's Mission for Sturge-Weber Awareness 2025: 5k, UTV/Jeep ride, silent auction. All proceeds directly benefit the Sturge-Weber Foundation.
Image by Krystal Ng
My Story

Hi! 👋
I'm Myla Jane...

Hi everyone! I'm Myla Jane Speer, and I'm 8 years old! I am a girly girl and I love to sing, I am totally obsessed with Frozen, all things mermaids, and I love hanging out with my little brother and sister, Everett and Aspyn. I'm also a super busy girl! I'm in gymnastics and dance, I'm a Pirate cheerleader, and I even play basketball and softball.

I'm also a superhero – well, kind of! I have something called Sturge-Weber Syndrome, which sometimes makes things a little tricky. It can affect my learning, my eyes, and sometimes I have seizures. But guess what? I don't let it stop me! I'm a fighter, and I'm learning and growing every day. I might need a little extra help sometimes, but I'm strong and I'm brave. So, that's me! Thanks for cheering me  and others who have Sturge-Weber on! 

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Myla's Mission Moments

My Life
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01

in 50,000 people are born with Sturge-Weber

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10

percent of babies born with a Port Wine Stain develop SWS

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1

incredible

Myla Jane

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