MOVE for MORCure was created to celebrate the extraordinary physical progress our daughter has made since being diagnosed with MORC2‑Related Disorder (also known as M2RD or CMT2Z) at just three years old, following years of repeated hospitalisations. Amber is now six. She cannot walk independently, experiences tremors caused by damage to her nervous system, and struggles with balance due to injury in parts of her brain.

Like many children living with M2RD, Amber wears leg splints day and night and undergoes experimental therapies in the hope of improving her quality of life. Her determination—and the determination of so many others facing this rare disease—is the inspiration behind MOVE for MORCure.

We hope you’ll join Amber in pushing yourself to your limit this Rare Disease Day, as she takes on a 500‑metre challenge. For a child with generalised muscle weakness, who at age three was not expected to ever sit up, this distance is the equivalent of an ultra‑marathon. Her determination is extraordinary, and your participation honours the strength she shows every single day..

MOVE for MORCure invites everyone to take on a movement challenge in honour of the daily effort and resilience shown by those living with M2RD. Every step, stretch, or stride is a tribute to their courage and a commitment to standing with them.

By moving together and supporting this campaign, we aim to raise essential funding for Phase 2 of our medical research partnership with the University of Cambridge, bringing us closer to answers, treatments, and hope for every family affected by this disease.