About Mama Bear

Hey all! I am Michelle – just your average Mama trying to make the world a more inclusive place by sharing stories about my experiences as a mother of two children: one who is “neurotypical” and one who is “neurodiverse.”

Let’s work together to raise awareness for my daughter and her friends who have been diagnosed with a rare genetic syndrome called Jordan’s Syndrome. Jordan’s Syndrome affects about 160 individuals worldwide. Through ongoing research, treatment is just a few years away. The intent for a cure is in the near future! Please share this journey with us as we learn more about our child, others living their lives with children who have been diagnosed with rare diseases and illnesses, and other peoples’ journeys. Together we will work to make this world a happier and more accepting place!

#FightingRarewithHaileybear 

Advocate

Living and learning but always informing. Teaching others about rare disease and disability as we navigate it together.

Mom

Mom to two beautiful children - one who is neurotypical and one who is neurodiverse.

Blogger

Writing as we go - the stream of conscious thoughts of a working mama learning how to juggle being a wife, medical mom, teacher, and managing to do it all!

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Happy Little Girl

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Hailey laying on her stomach on the floor
michelle and hailey

Looking to spread awareness for rare diseases and Jordan's Syndrome one blog post, one social media post, one conversation at a time.

Michelle Fruhschien Mama Bear for Rare signature

Michelle Fruhschien

JGA Rare Disease Day 2021

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