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.
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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.
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Latest Articles
Little Plaid Dress
I so often try to stay in the present. But a walk down memory lane has brought me back to the past and thinking about
The Grass is Greener…
Someone once told me not to compare. Don’t compare your life to anyone else, your children, your wealth, your struggles, don’t do it. “The
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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Latest Videos
In this heartwarming episode of NBC’s ‘George to the Rescue’: Witness the power of community coming together to create a safe and healing space for Hailey, a courageous young girl facing the complexities of a rare disease. At 8 months old, Hailey was diagnosed with Jordan’s Syndrome, a neurodevelopmental condition characterized by seizures and mobility challenges. However, despite being nonverbal,
Hailey is a joyous 4-year-old who continues to amaze her loved ones and therapists with her sheer perseverance and determination as she continues to conquer new milestones.
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.