18/08/2026
There are some partnerships that mean more than words can ever express, and our relationship with SUDEP Action: Making every epilepsy death count is one of those. 💜
We are incredibly proud to work so closely with SUDEP Action, a charity that has been such a huge part of our journey since we lost our gorgeous Charlie.
Over the years, we have been honoured to raise tens of thousands of pounds in Charlie’s memory, supporting SUDEP Action and the incredible work they do, including EpSMon.
Every penny raised, every conversation started and every bit of awareness created is a step towards preventing another family from having to endure the unimaginable heartbreak of losing someone they love to epilepsy.
We owe SUDEP Action so much. They have helped us turn the pain of losing Charlie into something positive — giving us a way to honour his beautiful life while helping to protect others.
Charlie will always be at the heart of everything we do at Charlie’s Star, and our promise to him is that we will never stop raising awareness, supporting vital research and doing whatever we can to create hope and smiles for other families. 💜⭐️
Together, we hope that one day no family will have to experience the devastating loss of a precious child to this silent killer.
Please take a moment to learn more about the amazing EpSMon app and the difference it can make: sudep.org/epsmon-app/
With love and gratitude,
Jan and Baz
💜⭐️
“We are incredibly proud to have raised tens of thousands of pounds over the years in support of SUDEP Action and EpSMon, in memory of our gorgeous little boy, Charlie, and all of our precious purple angels.
Every pound raised and every conversation started, gives us hope that together we can prevent more families from experiencing the heartbreak of losing a loved one to this silent killer. We will continue to do everything we can to raise awareness, support initiatives like EpSMon, and help drive research forward in the hope that one day there will be a cure for epilepsy.” (Jan & Barrie Burns, co-founders of Charlie’s Star)
Learn more about EpSMon: sudep.org/epsmon-app/