At 16, I left behind my small Midwest hometown and everything familiar to join a clinical enzyme trial on the West Coast. It was scary—leaving my friends, stepping into the unknown, not knowing what to expect.

Would it help me? Would I react badly? Would my friends forget me? Would I even be strong enough?

What I found was something I never expected: new friendships, unforgettable experiences, and a deep understanding of the critical importance of clinical research. The bond you build during a trial is unlike anything else—it becomes a family, one united by shared challenges and hopes.

Today, I gathered via Zoom with several of my fellow trial participants to celebrate 20 years since Naglazyme was FDA approved in 2005. Many of us have been on Naglazyme for even longer than

that. I'm honored (and a bit emotional) to be the "elder" in this photo, having watched some of these incredible humans grow from 6- and 7-year-olds into amazing adults. Each one holds a special place in my heart.

We also took time to honor the friends we’ve lost along the way. Naglazyme is a treatment—not a cure—and MPS VI still brings challenges. But we carry on, in their memory and for those who will walk this path after us.

Here’s to science, to perseverance, and to the power of community.

#Naglazyme20 #ClinicalTrials #MPSVI #RareDiseaseCommunity #Gratitude #Hope