Hoedown for Hope 2026 – Becs’ remarks

Welcome to the 2026 CureMPS Hoedown for Hope!

As you’ve already made abundantly clear, today is about finding joy, finding connection, and finding a cure for MPS.

We are so thrilled you’re here.

CureMPS is our family’s mildly insane way of turning Simon’s MPS IVA diagnosis from a journey of heartbreak into one of hope. We are in relentless pursuit of a cure for Simon and all children living with MPS. 

By showing up today, you’re helping raise awareness of this ultra-rare, progressive, life-limiting disease while also funding cutting-edge research that has the potential to transform lives. 

When we started CureMPS, we could only dream of what has now become reality. Simon is one of just three patients participating in a clinical trial that grew out of the very first project we funded. The trial is still underway, but I couldn’t be prouder to tell you that the drug is literally changing Simon’s life.

He is four centimetres taller than he would have been without the treatment—and he’s still growing. His spine has stabilized and his growth plates are realigning.

That is the impact you’re having by being here today.

Rare disease families like ours can help accelerate research by bringing funding, urgency, and lived experience to the table. It is an incredible privilege to see that work creating tangible impact for Simon and the entire MPS community. 

Two years ago, with the support of many of you here today, we hosted the Night of Hope gala and introduced CureMPS to the Victoria community. You showed up for us then—and looking around today, you’ve shown up for us again…. And it looks like you’ve brought some friends.

The morning after the gala, Simon woke up, looked at me with those big captivating eyes, and said:

“Mom, at our next event, I want it to be about kids having fun and not just grown-ups all dressed up.”

Since that moment, we’ve tried to centre Simon’s ideas in everything we do.

And here we are.

The Hoedown for Hope.

Simon named it. Simon imagined it. He envisioned a barn dance for everyone—with music, games, dancing, food, and fun.

So thank you, Simon, for bringing your magic to all of us everyday.

—

Before I hand things over to Simon, there are a few people we’d like to thank.

First, to our sponsors—The Van Gyn Family and Cadboro Bay Dental, the Kerr Family, Island Floor Centre and the Jawl Family, Breneric Construction, Allterra Construction, and The McAdams Foundation—thank you for believing in this mission and helping make today possible. 

And to our many incredible Friends of the Hoedown sponsors, your generosity and support means more than you know. Events like this simply don’t happen without people and businesses like you.

A huge thank you as well to our prize donors who filled our silent auction, door prizes, and costume contests with so many amazing items. Your generosity helps turn every bid and every ticket into reaching our $50,000 fundraising goal.

Thank you to our bands, food vendors, media partners, and community supporters—including Flickers and Ferns, M1, Riptide, YAM, Four Frames, and Canter —for helping create the magic of today. 

A big thank you to our small but mighty organizing team: Chris Noel, Christine, Alison, and Stephanie, along with our incredible volunteers and emcee Jennie. You have poured your hearts into this event, and it shows. Please join me in giving them a huge round of applause.

And finally, a thank you to our family—thank you for walking this journey with us every step of the way. This is truly a family-led effort and your support and being here makes it all possible. And a special thank you to Simon’s brother and sister Spencer and Isabel – Simon is lucky to have you two by his side. Let’s give them a round of applause.

And as we celebrate today, we’re also holding my mom Pippa close to our hearts and can’t wait until she’s back on the dance floor with us next year!

Now, over to Simon!

<<Simon then proceeded to take the mic and eloquently thank everyone for coming, remind them of all the different Hoedown activities, asked who was wearing blue, and left the crowd feeling his magic!>>