I’m Mama Bear for Rare

Advocate / Mom / Blogger

Mama Bear for Rare came about when Hailey was diagnosed as having a rare genetic condition called Jordan’s Syndrome in 2020. Join us in our experiences as we navigate this world together.


Happy Little Girl





I've Been Nominated for the Social Health Awards!

A big thank you to the community members who nominated me for the #SocialHealthAwards! I’m so excited to be a nominee this year. If you can, take a moment to visit my Social Health Network profile and add your support by nominating me for the Community Cultivator Award.

Latest Articles

The thing about Grief…

For a while, I reached a place of contentedness, maybe even close to acceptance, and found a good balance in life in which I could grieve the loss of what we pictured, and find joy in what we have.

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Mother’s Day Gift

I am blessed with the gift of motherhood. I know that there are mothers all over the world who have their own meaning of what this day means and that is not lost on me.

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She Can and She Will

I thought to myself, how many times have parents been in a meeting when they wanted to cry tears of joy? I thought… were there parents sitting on the other side wanting to cry because they were overcome with so many fears for their child?

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Hailey and Noah doing tummy time

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Latest Videos

Mama Bear for Rare - Featured on Today Show with Extra Lucky Moms

As part of the NBCUniversal initiative Giving Because We Care, TODAY’s Hoda Kotb shines a light on Extra Lucky Moms founders Taryn Lagonigro and Jess Quarello who found a way to spread support online to parents of children with special needs. Also featuring Michelle Fruhschien of Mama Bear for Rare. All 3 also get surprised with a spa day and a special donation to the non-profits Rock the 21 and Jordan’s Guardian Angels.

Special Needs on the Table with Michelle Fruhschien of Mama Bear for Rare

Welcome to Special Needs On The Table with hosts Alyssa Apostolopolous and Yomi Karade. We are honored to have Michelle Fruhschien on our show. She is a wife, mother of 2 children, English and special needs teacher, and an incredible advocate for her daughter who has Jordan’s syndrome, a rare autosomal dominant neurodevelopmental disorder. 

This episode of Being Rare Live is about self-care and the importance of prioritizing yourself when navigating a rare disease journey. Being Rare host Sarita Edwards joined by Dr. Aditi Kantipuly, Michelle Fruhshien, and Jeffrey Benton to talk about how you can start your self-care routine in as little as 7 minutes in the comfort of your home.

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