On April 27, 2024 we hosted the first ever CureMPS Night of Hope. Over 200 people gathered to celebrate, learn and raise money for MPS research. Below is the speech that Simon’s mom, Becs, gave as part of the event program.

“As Jennie said, I’m Becs. I wear many hats in life, and tonight I’m here as event planner, the engine behind CureMPS and Simon’s mom.  

I am completely blown away at the amazing humans in this room. I see old friends, new friends, neighbourhood acquaintances, colleagues, friends of friends, family, and so many new faces. Whatever your reason, thank you for being here – it means the world to us.

I’ll start by asking for a bit of leniency . . . . I may stumble or read from my notes as I get through this – it’s been a very long 6 weeks since I’ve slept in my own bed . . .  I’ve been by Simon’s side – day and night – as he’s undergone a massive surgery to rebuild both hips and re-align his knees and ankles. I’ve slept on hospital couches, recliner chairs and on the floor. In fact, Simon and I are currently living at BC Children’s Hospital – we escaped for the weekend to be here tonight. This isn’t his first and certainly won’t be his last surgery, so I simply consider this endurance training for the marathon – or Iron man – journey that is ahead for us as an MPS family.

You maybe asking yourself . . . why is this crazy family hosting their first major fundraising event at the same time as an in-patient hospital stay for Simon?   

But the answer is simple – Simon – and all kids living with MPS – are in urgent need of our help NOW. They can’t wait for the perfect timing. In rare diseases like this, the onus is on patients and their families to spark the interest of the research community through fundraising, advocacy and raising awareness.

Last May we started with a simple ambition to raise awareness about MPS – we launched CureMPS with no roadmap about where we were headed. Momentum grew quickly as we watched our community embrace us with such openness and enthusiasm. There are so many amazing memories from this past year . . . we had blue shirt day, the MPS pronunciation challenge on social media, two wildly successful music bingo nights, Simon reading the starting line up for the Columbus Blue Jackets, and hundreds of messages of support pouring in when Simon underwent a 6-hour surgery last month.

One of the most incredible experiences of the last year was the immense satisfaction of sending the first $30,000 we raised to a project at UCSF-Oakland and then working directly with the research team to enroll Simon as one of 6 patients. It’s still a work in progress, but that experience as been so motivating – to experience the ability of family-led fundraising to directly drive research.

I cannot wait to get to work in the months ahead scouring the globe for the most promising research projects to invest in with the money we will have raised by the time Simon turns 8 next month.

Who knows what breakthroughs we will be celebrating next year when we gather again to celebrate the awesome power of this community.

The older Simon gets, the more this brutal and progressive disease steals from him. Sometimes it feels selfish to be asking for people to invest in this campaign because of the perception that it’s just for Simon. But I assure you this goes far beyond our Simon. There are thousands of MPS families around the world who are drowning in the burden of this disease and the associated caregiving demands. We are doing this work on their behalf.  We know that all kids living with rare diseases like MPS deserve a brighter future.

For those of you who are new to the very rare world of MPS, I’ll give you the coles notes: muchopolysaccharidosis is group of rare genetic disorders that occur in about 1 of every 20,000 live births. Simon has Type 4A, or Morquio Syndrome – one of the most rare forms . . .occurring in 1 of every 300,000 lives births. There’s a missing an enzyme that we all take for granted which causes to accumulation of cellular waste in every cell in the body.  For Simon, it primarily affects his bones, spinal cord, joints, eyes, ears, and heart. The layered complexity of so many different parts of the body progressively deteriorating, is the cruelest part.  Receiving an MPS diagnosis casts families adrift into a very tiny and isolated global community. 

My request tonight is simple.  If you haven’t already, jump in and join this CureMPS community with both feet – we promise that it will bring you joy, learning and real sense of impact. We’re in this for the long haul and hope you’ll be there with us all the way. We won’t ever know exactly where we are headed, but we know that with you all by our sides, we will continue to turn our overwhelm into hope and adversity into joy.

Tonight we invite you to invest in hope.  Hope for a better future for kids with MPS, hope for people living with all rare diseases and hope for Simon to continue to thrive and keep bringing his incredible magic to the world. “