Our London Marathon Story - Running Together Again

Last year, two strangers stood at the start line of the London Marathon: Trevor, running for his son Owen who lives with Bethlem myopathy, and me, Lynsey - running with Myotonic Dystrophy Type 1, the condition that took my dad and now affects me too.

We hadn’t met before that day.

But we ended up running all 26.2 miles side by side.

For Trevor, running alongside someone living with a muscle-wasting condition brought a new understanding: of the daily challenges, the unseen battles, and the strength it takes just to keep going.

For me, it was a moment of solidarity - someone choosing to shoulder part of the fight with me.

That run created a friendship for life.

So April 2026 we’re going back.

Together.

Back to the start line. Back to the London Marathon.

And this time, we’re crossing that finish line side by side.

Why We’re Running :

I (Lynsey) live with Myotonic Dystrophy Type 1 - a progressive, inherited, and cruel condition with no cure. Eight years from diagnosis, I’m still fighting to stay healthy, to stay mobile, and to stay here for as long as possible.

I share my story not for pity, but because DM1 is still misunderstood, underdiagnosed, and desperately underfunded. Awareness saves lives. Research changes futures.

Trevor runs for his son Owen, who lives with Bethlem myopathy - another rare muscle-wasting condition that most people have never heard of, and even fewer truly understand.

Different conditions, but the same battle.

Different stories, but the same hope.

Our Goal

We’re raising money for Muscular Dystrophy UK, supporting research, support services, and the fight to find treatments - and one day, cures - for conditions like ours.

If you’ve taken the time to read our story, thank you.

Your support means more than you know.

Because for families like ours, for everyone living with muscle-wasting conditions…

#EveryDayCounts.

Lynsey & Trevor 🧡

#MusclesMatter #MuscularDystrophy #TeamOrange #LondonMarathon2025