Read our latest blog posts here.
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Where Your Donations Are Going: Two Research Projects You Are Powering Forward
One of the commitments we make to our donors is simple: if you invest in this work, you deserve to see exactly what your support is advancing. . . Read more
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Finding hope in a WORLD of research
Our time at the WORLD Symposium, meeting with our research partners and finding hope around every corner…. Read more
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Simon’s November 2025 Surgery: Why It Wasn’t “Just” One Procedure
In March, Simon returned to BC Children’s Hospital for what was technically one surgery . . . Read more
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Our story on Patient Voice
Creating meaningful change in disability and rare disease: Simon and Becs’ story. Click here . . . Read more
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Dreams come true in Louisville!
Last weekend we travelled to Louisville, Kentucky for the incredible Rooting for Robert Gala — and we came home . . . Read more
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Our first Hoedown for Hope – May 30, 2025
Our first Hoedown for Hope was a bigger success than we could have hoped for. Raising over $15,000 and bringing together a community of over 400 people in support of Simon . . . Read more
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Sturgeon fishing with Rick Hansen!
Sturgeon fishing with Rick Hansen, opening a whole new world of adventure and friendship . . . Read more
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Simon and the BC Children’s Hospital Foundation’s Clinical Trial Superhub
This past fall, Simon was part of something that felt very close to home – the fundraising campaign for …. Read more
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Simon’s double hip osteotomy and the long road to recovery
On March 19, 2024, Simon had one of the biggest surgeries of his life . . . Read more
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A Night of Hope – Becs’ speech
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A spring break to remember
On January 30th at 9:36am an email from BC Children’s Hospital landed in my inbox confirming a March 13th surgery date for Simon. Read more
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Filling our cups
The end of January has finally arrived – it always feels like the longest month of the year by far. Reflecting back on the past few months, it’s certainly been . . . Read more
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Never a dull moment!
Early on in Simon’s diagnosis, another MPS mom who I had a chance to meet (who is now a close friend) warned me that this journey . . . Read more
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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 . . . Read more
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Designing CureMPS
Working with the Hoskins to create the identity system for CureMPS was unlike any of the projects… Read more
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MPS Awareness Day – teacher/parent resources
If you’re a teacher or parent looking for ideas about how to talk to your students or kids about MPS Day . . . Read more
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The ups and downs of Simon’s first trip to Nemours
Early in Simon’s journey with Morquio syndrome, we learned that the global hub for research and orthopedic . . . Read more
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Infusions, infusions and more infusions!
As of April 2023, Simon has had over 220 enzyme infusions and when I do the quick . . . Read more
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Why CureMPS?
My first blog – oh my! As I start to exercise my creative writing muscles after what feels like decades of downtime . . . Read more
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Read our story about MPS Type 4A
and how it has changed our lives.
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