CureMPS launch – what a blur!

It’s the end of September and the cozy vibes are settling in all around us. As I embrace the new season, I’m realizing that fall is a dichotomy for me – in some ways there’s a welcome, slower pace to life –  but at the same time it feels like a whirlwind of busy days getting organized and calendarized for the school year.  I’m grateful to finally feel like I have a wee bit of breathing room to pause, reflect and share about the launch of CureMPS back in May. 

Just before we launched, I had butterflies in my stomach – nervous about how it would feel sharing our story with the world and unsure about how people would respond – but also excited about what kind of magic we might unlock. As Brene Brown so eloquently states “Vulnerability is not winning or losing; it’s having the courage to show up and be seen when we have no control over the outcome. Vulnerability is not weakness; it’s our greatest measure of courage.”

Our launch of CureMPS and MPS Awareness Day was truly incredible. We put our story out to the universe and almost immediately we could feel a sense of relief – people were so grateful to know more about what Simon faces as a kid with MPS 4A. As one of the kids’ teacher’s shared with me, “the more you know, the more you care”. The launch in May was primarily about sharing our story and raising awareness – with fundraising as a secondary goal. Despite that, we’ve already raised almost $20,000 which gives us great momentum as we prep to reach our fundraising goal of raising $100,000 before Simon’s birthday next May (more on that to come!). 

We were thrilled that the media picked up our story which helped spread the word well beyond our community – the CTV feature was even picked up by CTV Vancouver!

We invited everyone to wear blue on May 15th to help spread awareness and the response was phenomenal. We sold 150 bright blue CureMPS shirts (still available!) and couldn’t believe the sea of blue at the kids’ school – over 600 kids and 9 out of 10 of them were wearing blue for Simon. The sense of community was stronger than we’ve ever felt.

Something about the launch tapped into people’s hearts, through celebration and joy we were able to reach people in a truly meaningful way. Our instagram following (@curemps) grew quickly with our MPS Awareness Day posts reaching over 10,000 people! By simply inviting people to try to pronounce the word ‘mucopolysaccharidosis’ we gave people an easy and accessible way to get involved. And local business like 49 Below Craft Ice Cream and the Fernwood Inn even jumped in to support us!

All in all, we were thrilled with the launch of CureMPS and curious about where it will take us next! Thanks for being here, it means more to our family (and especially Simon) than you might realize.

Learn more

Read our story about MPS Type 4A
and how it has changed our lives.

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