Emma IS, a Toronto-based non-profit, was founded by Monica Diaz-Greco and her husband to raise awareness about Infantile Spasms (IS), a rare and often misdiagnosed form of epilepsy that their daughter Emma was diagnosed with as a baby. Since 2018, Emma IS has educated families, provided support, and raised funds for IS research at SickKids Hospital. The organization also advocates for systemic change, including improved epilepsy policies in schools and partnerships with global networks to advance IS awareness and research.
Describe your charity/non-profit/volunteer work in a few sentences.
My daughter Emma was diagnosed with a rare form of epilepsy called Infantile Spasms (IS) when she was 7 months old. My husband and I had never heard of Infantile Spasms before her diagnosis. Shortly after her diagnosis, we said to ourselves that we have to do something to ensure that other parents are aware of Infantile Spasms. We wanted to inform and educate so that Infantile Spasms could be caught early thereby ensuring a better outcome for all IS babies. Emma IS is based on the acronym IS (Infantile Spasms) and the fact that ‘Emma is who Emma is’. She has no benchmark to go against – she is Emma. Proceeds generated from our endeavours go towards research projects that help combat Infantile Spasms at The Hospital for Sick Children in Toronto.
What problem does it aim to solve?
Emma IS raises awareness for Infantile Spasms and epilepsy and provides support for families going through a similar journey while raising funds for Infantile Spasms research at SickKids Hospital in Toronto.
When did you start/join it?
My husband and I founded Emma IS as a grassroots movement in 2018 and we incorporated as a Canadian non-profit organization in 2022.
What made you want to get involved?
My husband and I couldn’t find a lot of information about Infantile Spasms and wanted to educate others on what to look for. Infantile Spasms are considered a medical emergency, but it is often misdiagnosed, and prompt medical attention is key. We wanted to ensure other parents would know what to look for. But I would also admit that establishing Emma IS helped us deal with the roller coaster of emotions that engulfed our lives. We wanted to channel our sadness and anger into something positive.
What was the situation like when you started?
We couldn’t find a lot of information about IS in Canada and it was difficult to make a connection with other families who went or were going through, similar experiences. We decided we needed to be that for others. We started to learn that there are a lot of misconceptions surrounding epilepsy and first-aid treatments, so we knew we had to help many other organizations generate more awareness.
How has it changed since?
We have accomplished quite a bit in a short period of time being a small organization. We have learned a lot about IS and epilepsy and have become advocates for Emma and for other people living with epilepsy. We have partnered with the SickKids Foundation to raise money for IS research. We presented a delegation to the Toronto Catholic District School Board (TCDSB) Board of Trustees to get Purple Day for Epilepsy Awareness (March 26) recognized in all TCDSB schools. We have partnered with Epilepsy Toronto to create lesson plans that were distributed to Toronto schools. We advocated for the passing of Motion 68 at Queen’s Park. On November 15th, 2023, Burlington MPP Natalie Pierre presented the following motion, “That, in the opinion of this House, the Ministry of Education should call upon Ontario school boards to implement a comprehensive epilepsy policy, which includes training to teachers and staff on the administration of emergency epilepsy medication to students having an epileptic seizure promoting a safe and healthy learning environment.” Furthermore, in January 2024, we became a member of the Infantile Spasms Action Network, a collaborative network of 30+ national and international entities dedicated to raising awareness of infantile spasms (IS).
What more needs to be done?
More research and awareness would help to ensure prompt treatment of IS babies and people living with epilepsy. There are still a lot of misconceptions surrounding first aid treatments, what it means to have epilepsy and what constitutes a seizure. Infantile Spasms is often associated with other medical conditions making it so important to get an early diagnosis. However, for many cases of IS, like Emma’s, the cause is unknown making diagnosis, treatment and understanding difficult. We need more research and education to find the root cause associated with IS so that a targeted treatment can be applied.
How can our readers help?
Ask your MPP, School Trustees and School Staff about Motion 68, and what can be done to make our schools safer for children with epilepsy. On a larger scale, learn more about epilepsy and how to help those with epilepsy. As I’ve mentioned, there are many misconceptions associated with epilepsy. 1 out of 100 people in Canada have epilepsy. The more we know about it, the safer people with epilepsy will be. Wear purple on Purple Day (March 26) for epilepsy awareness. You can learn more on Epilepsy Toronto’s website.
Visit our website to learn more about Infantile Spasms, epilepsy and to learn about Emma’s story. Share this information with others. If you know any companies that are looking for an opportunity to help make a difference, we have some ideas in mind and would love the collaboration. And, please donate to Emma IS. Funds raised go to support IS research at the Hospital for Sick Children.
Do you have any events coming up?
We are currently planning a Family event in June 2025. Please visit our website often or follow us on social for updates as we get ready to share.
Where can we follow you?
Facebook | Instagram | LinkedIn
PAY IT FORWARD: What is an awesome local charity that you love?
We love Epilepsy Toronto. We are so proud to be working with an organization that shares our values and fights the fight alongside us. We have benefitted from many of their services and many of their staff are like extended family members. Supporting their events has become an important part of our yearly family calendar. Check them out!
