About us
who are we?
Kate Kostolansky
Founder & CEO of Brave Bears Club
New England born and raised, Kate Kostolansky lives in Exeter, New Hampshire with her husband, Brett, their two beautiful children, Charlotte and Theodore, and one lovable but very naughty Newfoundland poodle, Grizzly Rose. Their hands and hearts are filled to the brim!
Kate brings her personal experience as a mom of a child diagnosed with Infantile Spasms and all the mama bear qualities that come with it. Determined to shed light onto this largely unheard of condition, she set out to share her journey in the hopes other families would find comfort during their diagnosis. This is Kate’s first children’s book and she likens it to quintessential motherhood where you have no experience, are in over your head but, somehow wing it anyways! She is publishing with that same spirit - plenty of self-doubt outweighed by lots of love!
Our mission in the Brave Bears Club is to empower children with epilepsy through educational and inclusive resources that provide comfort and representation.
Our long term goals are to
Help
both children and adults better understand and identify Infantile Spasms and epilepsy.
Support
families on their medical journeys and give them unique resources they wouldn’t otherwise be offered.
Change
the conversation around epilepsy and increase awareness and reduce stigma.
By fostering understanding and inclusivity, we strive to make a positive impact on the epilepsy community.
Origin story
Char Bear Keeps Dancing was born out of a mother’s love, determination, and a hope for a better experience for other families receiving similar diagnoses.
“When my daughter, Charlotte, was diagnosed with Infantile spasms in August of 2022, my husband Brett and I were devastated and confused. In a whirlwind of within 24 hours, we went from casually exploring a seemingly benign body movement, to being admitted to an inpatient neurology service unit. At the time, I was 8 months pregnant with our second child. My husband forced me to stay at my parent’s house nearby to sleep that night while he remained with Charlotte.
Of course, I didn't get any sleep.
I spent the entire night reading everything I possibly could related to the type of pediatric epilepsy known as “Infantile Spasms.” Reading about the unpredictable future and the possible coinciding developmental impact was terrifying. Despite working in the healthcare industry, I was struck by the fact that the information available for public consumption online was largely outdated, negative or non-existent.”
How the “Brave Bears Club” was born
“The “story” about Char Bear was initially written as a note in my phone with the hope to explain, at a basic level, what was going on to Charlotte’s teachers and classmates. As I connected with families, mostly moms of other IS kids through various social media platforms, it was clear that accurate and positive materials available were greatly lacking. There was little information on pediatric epilepsy, but even less on Infantile Spasms. The more I continued to learn and the more families I connected with, the more this idea grew.”
Co-authors & translators
A Parent & Physician dream team
Healthcare professionals who contributed to the book
Christina Briscoe Abath, MD - PEDIATRIC NEUROLOGIST
Christopher Yuskaitis, MD - PEDIATRIC NEUROLOGIST
Juan Fransico Cabello, MD - TRANSLATOR (SPANISH)
