Walk with Aumie

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.

Happy first day of school Aumie! 1st grade here she comes!!
08/31/2026

Happy first day of school Aumie! 1st grade here she comes!!

08/31/2026

SAVE THE DATE 📆

Our Walk, Run, Roll fundraiser planning is underway.

In the meantime, we are hosting a logo contest for this event! Help us design a Walk, Run, Roll logo to be used for the event and shirts!

🎉Winner will receive $100 off their 2027 Conference registration. Plus how cool to see your design out in the world! 🤩

Submissions due by Sunday, August 30, 2026

Submit here👇
https://forms.gle/4ycQXwRAuVBqUfCv5

08/15/2026

Sweet potatoes 🍠
avocado 🥑
Strawberries 🍓
Blueberries 🫐
Chickpeas
A nice meal for the princess 👸🏽

07/23/2026

We are now officially connected with the Simons Searchlight Research study where they will follow Autumn/ her medical needs & development for life. In doing so this can provide further research into Autumns everyday life medical difficulties and as well provide help for others who are born with CSS. 🥹🫶🏽

07/23/2026

Good morning! At 10am we kick off our first day of our Coffin Siris Syndrome conference; we are so excited! We also just learned there are 3 other children in Massachusetts with the rare CSS 🫶🏽💖

06/16/2026

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

06/11/2026

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.

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Boston, MA

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