ISG Treasurer Lee Completes Ultra Marathon for Ichthyosis

We are incredibly proud to share the inspiring journey of Lee, ISG Treasurer, who recently pushed himself to the limit by completing an ultra marathon in honour of the ichthyosis community. Lee’s determination, resilience and heartfelt motivation behind this challenge truly reflect the spirit of our members and supporters. 

His story is not just about miles run - it’s about raising awareness, showing solidarity, and making a real difference for families living with ichthyosis. We’re excited to highlight his achievement, the reasons behind his fundraiser, and the amazing impact he has made. 

Why I Ran 100 Miles for Ichthyosis: Bamburgh-to-Edinburgh 100-mile ultramarathon which I completed in 40hrs. 

When people ask why I decided to run 100 miles from Bamburgh to Edinburgh, the honest answer is that it was never just about running. It was about showing what endurance really means, not just in sport, but in life.  

Why I Did It  

My family's experience with ichthyosis shaped everything about this challenge. Ichthyosis is a rare genetic skin condition that requires constant, daily care. It's exhausting. It's painful. And it never stops.  

Living with Ichthyosis demands strength, patience, and resilience. These are the same qualities you need to finish an ultramarathon. I wanted to create a tangible example of that endurance, something people could see and understand, while raising awareness for the Ichthyosis Support Group (ISG) and the families they help. 

For families affected by rare conditions, every day can feel like mile 70 of a race: painful, exhausting, and yet still unfinished. This run became my way of saying: we keep going, no matter how hard it gets.  

The Training  

I trained for around six months under a structured plan with the team at Omnia Performance, who specialise in endurance and strength training.  

Training involved:  

• Back-to-back long runs on weekends, gradually building from 20 miles to 40+ miles eventually both Saturday and Sunday (fun weekends!) 
• Strength sessions in the gym to protect my joints and improve fatigue resistance 
• Night runs and hill work to simulate the terrain and mental fatigue of running through the night 
• Mental preparation: learning how to manage discomfort, self-doubt, and the inevitable low points during an ultra  

Every week was a test of consistency rather than talent. You don't train to run 100 miles fast. You train to keep moving when everything hurts.  

The Reality of 100 Miles  

Let me be honest: this was without a doubt the hardest thing I've ever done. Physically, mentally, emotionally.  

The weather was brutal, my body was battered, my legs gave up, and I wanted to quit more times than I can count - but I didn't quit. I kept going because of everyone who sent messages, voice notes, who cheered me on, donated, and reminded me why I was out there. I kept going because of a kind lady in a shop on Spittal Beach who gave me a poncho in the pouring rain when I needed it most.  I kept going because this wasn't just me running a silly race. This was for our rare disease community, especially those living with ichthyosis who show this kind of endurance every single day.  

What We Achieved 

We raised over £3,000 for ichthyosis, but beyond the money, we raised awareness, we started conversations. We showed people what living with a rare condition actually looks like, not through medical jargon, but through shared human experience of pushing through when you want to stop.  

What I Hope This Means  

My goal wasn't just to cross a finish line. It was to show that extraordinary challenges can come from ordinary people when there's purpose behind them.  

If even one person learned about ichthyosis through this run, or felt encouraged to face their own challenge, then every painful mile was worth it.  

Because endurance isn't just a sporting achievement. It's a reflection of the courage many families live with every single day.  

And sometimes, the best way to honour that courage is to show up, keep moving, and refuse to quit, no matter how hard it gets.  

Fundraising enables the Ichthyosis Support Group (ISG) to continue its vital work, supporting the community and driving progress in care and research. Donations help fund studies that deepen understanding of ichthyosis and lead to better treatments, especially for the rarest forms that might otherwise be overlooked.

Your support also brings people together. Events like Family Conferences, Family Days and Children’s Camps offer connection, trusted information and a sense of belonging for those affected.

Watch the video below to hear directly from Lee and researchers about why fundraising is so important, and the difference your support can make.