Together, we move
from care to cure.

When the diagnosis first came, the words landed like a sentence. A clinician framed muscular dystrophy as the onset of the end of life, and in that moment every door I could imagine seemed to close at once. I sank into depression. I met rejection at every turn — from employers, from acquaintances, from a world that did not know what to do with a body that was slowly changing. There was humiliation in being seen as diminished, in being spoken about rather than to.

Somewhere in that darkness I refused to accept the verdict. I turned toward research, reading everything I could find on the dystrophinopathies, on gene science, on the trials being run across the world. I enrolled in multiple medical trials, putting my own body forward so that the answers might come sooner for the families behind me. Each trial taught me how much is still unknown — and how urgently people living with these conditions need someone to guide them to the right care.

That urge to guide is what became this council. I want no family to walk the road I walked alone — from the shock of diagnosis to the long search for a clinician who understands, to the wait for genetic confirmation, to the daily work of living well. Counselling, coordinated care, and honest counsel must reach every family, regardless of where they live or who they know.

Our vision is simple and stubborn: from care to cure. Today we assemble the teams, record the data, and stand beside families so that living with muscular dystrophy means living well — with dignity, with support, and with the resources to make each day better than the last.

And we hold onto hope. The science is moving. Gene-targeted therapies, registries that make research possible, and coordinated care are bringing a cure closer. Until that day arrives, the council will not rest at care — we will keep walking toward cure.