Walk with Aumie

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Walk with Aumie Join us as we grow and learn together in this special world. We hope to show awareness 💖

Aumie is a 5 year old strong, beautiful and determined little girl with Coffin Siris Syndrome & we’re opening our hearts to show the world how rare and great she is.

16/06/2026

Good morning ☀️
In exactly one week Aumie will graduate kindergarten & then the very next day she will turn 6 years old 💖🥳

11/06/2026

Aumie loves her new sprinkler set 🥳

06/06/2026

Some advice for families/guardians to children and adults with special needs…if they tend to wander off, are nonverbal or have a disability-your local police department provides resources with gps devices to help assist with tracking if they get lost. I’d highly recommend to every family to look into their local police department for these resources. It breaks my heart when I see children are missing due to eloping, or when they get lost from a class, shopping centers and home.

08/05/2026

Levi & Aumie both have birthdays in June…isn’t that crazy?! 🤣 can’t wait to surprise them with their bday adventures for this year 💕🥳

08/05/2026

CONFERENCE SPEAKER ALERT! 📣

If you joined us in Denver, you likely got to meet Dr. Miller. If you didn't... lucky you... HE'S BACK! Dr. Miller is a medical advisor to the CSS Foundation and has spent this last year diving deep into his CSS epigenetics study. He will be joining us in Orlando from Seattle Children's/University of Washington to give us updates, take samples and enrollments, and connect with more of our dazzling herd. 🦓

08/05/2026

Joining us virtually this year will be Dr. Santen from Leiden University Medical Center in Leiden, Netherlands. Dr. Santen is a Medical Advisor to the CSS Foundation and will be giving us research updates from the year!

08/05/2026

Let's get things moving with Conference Speaker Announcements! 🥁

First up... the one and only Dr. Vergano, joining us from Seattle Children's Hospital. Make note: if you want to catch Dr. V and give her all the hugs, you need to do so Thursday or Friday before she jumps on a plane to her second conference of the weekend! It's tough being so loved. 🤟

06/05/2026

I’ll be graduating Kindergarten in just one month 🎓

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