Hello everyone, my name is Susie Johnston. I hope this fundraiser is one that you will share far and wide.

In 2014, my godson Felix was diagnosed with Duchenne Muscular Dystrophy, an aggressive & progressive muscle-wasting disease for which there is currently no cure. The long-term prognosis is devastating, as the continuous loss of muscle function eventually targets the heart and respiratory muscles, leading to major organ failure. For 12 years, since Felix' diagnosis, I have thrown myself into pools, lochs, lakes, rivers and seas, reaffirming that swimming has become an act of hope and an antidote to despair. In 2022 I swam the length of Loch Lomond and I have returned to swim yet again- For Felix and Duchenne UK.

In 2025, Felix and his family endured a further unbearable tragedy as his Dad, Ali Robertson, passed away at the age of 59 after a short and unforeseen battle with cancer. Ali was a fierce champion for Felix, for Duchenne UK, and it became his life's work to find a cure and better the lives of all those affected by the disease.

So what is the plan?

Over the next 12 months I am raising funds for Duchenne UK and the Felix Robertson Trust by getting into bodies of water - and swimming - in preparation for an epic swim in 2027.

The fundraiser kicks off this Sunday, 6th September 2026, as a way of honouring both Ali's legacy and Duchenne UK. I will be in Bannatyne's pool in Perth from 8am, swimming as many lengths as my body and mind will permit. Over the next few months my training plan is to slowly increase distances whether in a pool, loch, lake or sea.

On World Duchenne Awareness Day, 7 September, 2027 a monumental 12-hour endurance event will take place. This is set to be a swim that continuously circumnavigates the 7km distance around Inchmurrin Island in Loch Lomond. Any keen swimmers and kayakers wishing to join me- please get in touch.

To ensure this fundraiser makes the greatest possible impact, all proceeds from this page will be split equally:

50% to Duchenne UK: To help fund the groundbreaking medical research and clinical trials that are so desperately needed to find a cure and assist those with the condition.

50% to The Felix Robertson Trust: To directly fund the specialised mobility equipment, therapies, respite, care and home adaptations that are required as Felix's needs change.

No amount is too small. If you cannot donate, please share this link with your friends and family to help spread the word. I will report with monthly progress reports.

Thank you so much for reading this far. I hope this fundraiser goes some way to helping many who are affected by Duchenne Muscular Dystrophy and their families.

With love, stubbornness, and hope for a brighter world where the end to Duchenne is a reality, not only something imagined.

Susie