Move for Myhre

Join the Illawarra community for Move for Myhre, a relaxed 5km coastal walk raising awareness and funds for children and families living with an ultra-rare genetic condition.

Myhre Syndrome is so rare that fewer than 200 people in the world are known to have it. One of them is a local Wollongong baby, Felix. His family, alongside the community, have established Myhre Syndrome Foundation Australia to help ensure Myhre is no longer a life-limiting diagnosis.

This event is about hope, connection and action, and everyone is welcome.

Whether you walk the full 5km, stroll with the kids, bring the pram or simply come for the morning atmosphere by the ocean, your participation directly supports groundbreaking research, family support and the development of new therapies for rare disease.

What to expect

• 🌊 A beautiful coastal walk near Bulli Beach
• ☕ Community vibes
• 🎟️ Raffle prizes (including 2 x $50 Bulli Beach Café vouchers and Dajana Bakes 2 x $85 vouchers for dessert or grazing boxes)
• 👨‍👩‍👧 Family-friendly, pram-friendly & dog-friendly
• 💛 A powerful way to make a real difference

Why it matters

Rare disease affects 1 in 12 Australians, yet most conditions receive little research funding. Events like this help change that reality and your steps become part of a global effort toward new treatments and cures.

Registration is $40 and all proceeds support the work of Myhre Syndrome Foundation Australia.

Come walk with us.
Come be part of something bigger.
Come help build a future where rare is no longer invisible.