On 10 June 2026, we’re asking you to do something simple:

🕶 Put on your sunglasses and take a selfie

🏷 Tag @acta2allianceuk on Instagram

📲 Nominate 3 friends

💛 Donate

It’s called #ShadesForMSMDS

Why sunglasses?

Because for children living with MSMDS, an ultra rare genetic condition, light sensitivity is part of everyday life. Something most of us never even think twice about, can be overwhelming.

This small action helps raise awareness for a condition most people have never heard of - and supports the families living with it.

What is MSMDS?

Multisystemic Smooth Muscle Dysfunction Syndrome is a very rare genetic condition that affects the smooth muscles throughout the body. Smooth muscles control important automatic functions such as blood flow, breathing, digestion, bladder function, and the movement of the eyes.

People with this condition can experience problems affecting multiple organs and systems, including the heart and blood vessels, lungs, digestive system, bladder, and eyes. Symptoms and severity can vary widely, and many people require ongoing specialist medical care and support throughout their lives.

This is for Lily.

For her and other children with MSMDS, sunglasses aren’t just an accessory - they’re essential. Every eye counts.

Together we can raise awareness and funds for further research into a cure for MSMDS.