Walk for Freya & Caoimhe

🌄 Walking the Cuilcagh Boardwalk Trail – Saturday 1st November 2025

We’re taking on the stunning Cuilcagh Boardwalk Trail to raise awareness and funds for Myotonic Dystrophy – a rare, life-limiting condition that needs more attention, research, and support.

This cause is deeply personal to us. Freya and Caoimhe were both born with Congenital Myotonic Dystrophy, a severe form of the condition. Every day, they face challenges that most of us can’t imagine – yet they continue to face life with courage, determination, and smiles that light up the room.

What is Myotonic Dystrophy type 1 (DM1)?
DM1 is a genetic muscle-wasting condition that affects skeletal muscles used for movement, as well as the heart, lungs, and digestive system. It’s rare, progressive, and currently has no cure. But with more awareness and funding, there is hope for better treatments – and one day, a cure.

We’re walking for Freya, Caoimhe, and everyone living with Myotonic Dystrophy.
Every step we take is a step towards change.

We’re proud to support three amazing charities who have given us knowledge, comfort, and hope

💙 Please support us – whether by donating, sharing our story, or joining us on the walk. Together, we can make a difference.