Beyond IS #3: What a ride

A few days ago we posted a picture of a group of Spinners coming together to raise awareness for epilepsy.

But, that’s not the ride I’m referring to. Six years ago we opened up our world to the Epilepsy and Infantile Spasms community as we turned our private journey of IS into a grassroots initiative. Named after our daughter Emma, we launched Emma IS.

The name merges her name and the acronym of IS but it’s so much more. It’s the concept that Emma IS who Emma is. There is no benchmark or measurement that we hold her to. She is the energy and inspiration behind our ride.

We started just trying to share information about IS and how critical an early diagnosis is. Trying to build a place where families can ask questions or find resources. We didn’t have that and wanted to do whatever we could to help others. That led to a collaboration with SickKids for research funding and have some amazing work being done there, and collectively with other hospitals in Canada.

Then, realizing that we need to get more people taking about epilepsy, we delegated to the TCDSB Board of Trustees to have Purple Day recognized and celebrated in all schools every year. We need to continue to break the stigma surrounding epilepsy.

What happened next was something that never crossed our minds. Sitting in the Ontario legislature hearing Motion 68 pass was, and still is, a surreal moment. Ensuring a safe learning environment for every child was monumental. This was followed with a tour of media engagements enabling us to share this news across various communities across the province.

At the end of last year, we were nominated to the Infantile Spasms Action Network (ISAN) – a group of 30+ international organizations dedicated to raising awareness of infantile spasms.

Together We Can Stop IS!

What’s next? We don’t know. It’s a road that we travel daily and manage the obstacles when they arrive.

But on March 26, this year, and every year, we celebrate Purple Day.

​- Daniel