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Legend of the Lakes makes history 

Date Published: 03/09/2026

Neil Gilson is no stranger to fundraising for PANS PANDAS UK, having supported us for a number years. But recently, he’s really started making waves…

The former international swimmer has spent the last two years conquering some of Switzerland’s most demanding open-water routes, as part of his ambitious ‘Legend of the Lakes‘ challenge. The feat culminated with a gruelling 45-mile crossing of Lake Geneva, bringing to a close an endurance journey that has seen him swim a combined distance of around 230 miles.

Neil’s achievement is believed to be a world first, establishing him as the only swimmer to complete all 10 of Switzerland’s largest lakes! An achievement which is only further enhanced by the fact that he completed every lake in a World Record time. Along the way, he battled everything from freezing water temperatures and strong currents to exhaustion and sleep deprivation.

Neil with his son, Jack

For Neil, this challenge was about far more than sporting glory. The ‘Legend of the Lakes’ campaign was initially inspired by his son Jack, who developed PANS following a bout of tonsillitis when he was just a toddler. Speaking about the experience, Neil has described how Jack “went to bed a happy, healthy little boy and woke up someone we didn’t recognise“. His young son developed aggression, tics, obsessions and compulsions. He refused to eat and became scared even to leave the house.

After years of uncertainty, the family finally found specialist support and treatment. Today, Jack is thriving at school, enjoying sport and living free from symptoms. Neil says “his recovery inspired me to use my swimming achievements to help other families facing similar struggles and to support PANS PANDAS UK.”

Training for the challenge involved countless hours in swimming pools, the gym, and… the sea off the North Devon coast!

Yet, even with that preparation, Neil says “some of the lakes pushed me to my limits. Lake Maggiore proved particularly punishing, while the final swim across Lake Geneva tested me mentally and physically through the night, as strong currents and fatigue threatened to halt my progress.”

The emotional highlight came at the finish of the final swim. As Neil approached the shoreline after more than 22 hours in the water, his elder children Lily and Jack joined him for the last few hundred metres. “There were tears in my goggles,” he said afterwards. “For the whole challenge, I was envisioning that moment.” 

The completion of the challenge marks the end of an incredible sporting journey, but Neil hopes its wider impact is only just beginning. “I set out to swim ten lakes,” he said. “But the real purpose was always to create conversations, raise awareness and help more people understand PANS and PANDAS.”  

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Glossary

  • ADHD
    Attention Deficit Hyperactivity Disorder
  • AE
    Auto-immune Encephalitis
  • ARFID
    Avoidant Restrictive Food Intake Disorder
  • ASD
    Autism Spectrum Disorder
  • CAMHS
    Child and Adolescent Mental Health Service
  • CBT
    Cognitive Behavioural Therapy
  • Dysgraphia
    difficulty writing by hand
  • EHCP
    Education, Health and Care Plan
  • Emotional Lability
    Rapid, and dramatic changes in mood (for example uncontrollable laughter to crying)
  • Enuresis
    wetting
  • GAS
    Group A Streptococcal infection
  • NHSE
    NHS England
  • NICE
    National Institute for Health and Care Excellence
  • OCD
    Obsessive Compulsive Disorder
  • PP
    PANS PANDAS
  • PPUK
    PANS PANDAS UK
  • PPN
    PANS Physicians Network
  • PPSG
    PANS PANDAS Steering Group
  • SENCo
    Special Educational Needs Coordinator
  • SIGN
    Scottish Intercollegiate Guidelines Network to the glossary
  • Tic
    Sudden repetitive movement (motor tic) or sound (vocal tic) which is difficult or impossible to control