Every champion
deserves a champion

Most families reach this community by a rare road, and a lonely one. For a long time it can feel as though no one else has ever traveled it. Yet the family beside you set out on a road much like yours: the turns differ, but the road is the same.

This is the weekend the road stops being lonely. Three days when the scientists studying this gene, the clinicians turning it into care, and the families living it every single day stand in one place, at one time, for one another. Not a webinar, and not another waiting room. A gathering, and a homecoming for people who have never met. Or perhaps, by now, they have.