POWER IN PARTNERSHIP

 

In my life, I have worked in the entertainment industry and financial sector, and most recently took a full nose dive into the political arena.  During the course of my work, there were always problems that were too big to be solved alone. I witnessed proclamations of partnership, only to be disappointed by a lack of follow-through. Instead of giving up, I understood that fear probably fueled these retractions and  kept plugging forward. I can’t deny my expectations were a gateway to disappointment, however the issues I faced were never a matter of life or death.

 

Until now.

 

Our family’s battle to save our daughter’s life from a catastrophic form of pediatric epilepsy called Infantile Spasms (IS) changed everything. The journey was lonely, scary and there are so many things we wished we had known. On average, a pediatrician will only see two IS cases in their entire career. The absolute danger of this condition, caused by a lack of exposure coupled with the speed with which IS can destroy the developing brain, is unfathomable. Throughout our journey, I kept mental notes of what needed to be addressed when we were out of survival mode.
 

Mickie’s Miracles launched and we began creating partnerships with the best of the best in the epilepsy community because, once again, we faced a problem that even a mama bear on a mission couldn’t conquer alone. That led to a revolutionary collaboration created by Amy Miller of the Child Neurology Foundation: The Infantile Spasm Action Network.
 


 

The Infantile Spasm Action Network (ISAN) convened Tuesday in Chicago, uniting 25 global industry professionals with a shared mission to improve outcomes of IS patients.
 

ISAN’s purpose is as follows:

 

We will work together in the months ahead and reconvene in Washington D.C. during Infantile Spasms Week (ISAW) from December 1-6, 2017.
 

I left the meeting inspired and reinvigorated by what we created. By choosing to stand side by side, we drop our logos and labels and speak with #onevoice to get these children the urgent care they deserve.
 


 

Blessings,

Kristie Griess

Visionary and Founder

Mickie’s Miracles

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