Good luck to all our MDUK marathon runners going the extra mile for people living with muscle-wasting conditions

This Sunday 23 April 2023, 127 runners will don the MDUK colours and fasten their running shoes before taking on the 26.2-mile TCS London Marathon as part of #TeamOrange. We caught up with some of the squad to find out why they’ve decided to take on the challenge and how they’re feeling about the big day.
Good luck Gitte

Three years ago, keen runner Gitte was diagnosed with myositis, a rare auto-immune condition that involves chronic inflammation of the muscles. She explains “I was in utter disbelief. It seemed seriously doubtful that I would ever be able to run long distance again. 

“There were some very difficult times in those first couple of years. 

“I had to learn how to deal with symptoms like muscle tightness, discomfort in my legs, and fatigue. Finding the right balance between medication, side-effects and symptoms took a long time. Some days, my muscles really hurt.” 

Gitte says that running the London Marathon as part of the MDUK team is a dream come true. She tells us:  

I felt an instant sense of belonging when I learned that the charity embraces people like me who are living with myositis. 

Through this challenge, she hopes to raise awareness about myositis and wants “to show the world that it is possible to live an active life while living with a chronic condition.” Read more about Gitte’s story. 

Sid has found his calling

Sid is running the marathon in support of his younger brother who lives with myotonic dystrophy, a rare muscle-wasting condition dressed as a full-sized phone box weighing 15kg – because the marathon itself isn’t challenging enough already.  

He says “I’m inspired every day by my brother. He doesn’t complain and yet he’s been through so much. 

“I want to raise awareness among Rob’s friends and family, as well as raise vital funds to support deeper research because there is still very little known about myotonic dystrophy, as so few people have the condition.” 

Sid training for the marathon wearing his phonebox costume

Having previously run in the telephone box costume in 2014, while running for Mind, Sid knows what he’s letting himself in for. He tells us his training has been going well, even if he’s had a couple of funny stares while practicing in his costume. “Learning to run like a penguin again is painful. I have the occasional person looking at me with open mouth and the odd dog and horse give me a wide berth.” 

A marathon for a milestone birthday

Debbie and her husband, Karl, are taking on the London Marathon as a duo this year to mark Debbie’s 50th birthday.  

She explains, “I wanted to do something to mark my milestone birthday and each time I have run the London Marathon it has felt like a huge street party so I can’t think of a better way to celebrate! 

“Working for MDUK, I’ve witnessed first-hand the truly incredible work the charity does. I know how important it is to continue to raise vital funds to support the ground-breaking research work. This will help MDUK to discover potential new treatments and ultimately one day find a cure for muscular dystrophy.” 

Debbie and Karl running, wearing their Team Orange jerseys at the Brighton Marathon

Debbie is no stranger to clocking up the miles. She has recently completed the Brighton Marathon, making the London event her fifth marathon for her fifth decade.  

Good luck and Happy Birthday Debbie! 

Supporting families beyond the day job

Susanne is a Specialist Neuromuscular Physiotherapist, who works at the Royal Hospital for Children in Glasgow. She’s decided to go above and beyond her day-to-day role, explaining “I’m running in support of all the families we see in Glasgow and hope they can benefit from the support and guidance MDUK provides.” 

“Working in the neuromuscular team, I see first-hand the great work MDUK does to support people living with a muscle-wasting condition and their families.  I work with a fantastic MDUK advocacy officer who is invaluable in guiding people’s access to benefits and support networks, providing a voice to enable families to get the assistance they are eligible for, and defending their rights.” 

Susanne is running to support investment in research, raise awareness, champion better care and support, as well as access to education and sporting opportunities for people living with muscle-wasting conditions.  

Thank you, Susanne.  

Like Mother, like Daughter

Both Caroline and her mum, Mel, were diagnosed with myotonic dystrophy type 1 (DM1) in 2021 and 2020. She told us that since then, “running has taken on a whole new meaning of importance in my life.” 

Caroline explains, “I feel like it is important for me to run and support MDUK this year, as I feel extremely fortunate to be in the position of being able to run a marathon at present, while I’m only experiencing mild symptoms of my condition.” 

It’s very easy to take for granted what we have and assume that we will always be able to do these things when the truth is – we never know what’s around the corner.

Charlie Hodgson tackles the London Marathon

Retired Saracens, Sale Sharks, and England rugby union player, Charlie Hodgson, has swapped his rugby boots for his running shoes in support of people living with muscle-wasting conditions. 

Charlie was inspired to enter after hearing Louisa Hill, one of MDUK’s Trustees, speak about her son, Archie, 17, who lives with Duchenne muscular dystrophy at the Celebrity Sports Quiz

Charlie Hodgson smiling, wearing an MDUK Orange T-shirt

He explains, “Feeling a bit of pain through the training, and potentially the race, pales into insignificance when you hear of the difficulty felt by those who are living with muscular dystrophy. It’s heartbreaking to know there isn’t a cure yet, but the money that I raise will hopefully be a small contribution toward helping reach ground-breaking treatments.” 

Read Charlie’s full marathon story.  

John’s 10th Marathon for MDUK

John Pike, aka Pikey if you see his MDUK top on marathon day, is running in support of his nephew, Ross, aged 26, who lives with Duchenne muscular dystrophy. John, an avid runner, will be completing his 10th Marathon for MDUK. 

He tells us,  

Ross is very active, he loves Spurs, music concerts, the cinema, horse racing. His family are amazing in how they look after him. I’m doing this event because I want to help fund research in the hope we can find a way of slowing or curing muscle-wasting conditions, if at all possible.

John and Ross’s family have been active fundraisers for MDUK over the last 20 years, raising a huge sum of over £60,000 for the charity. John said: “We have had so much fun raising money with various quiz nights, discos, coffee mornings, cake sales, taking part in MDUK’s Pedal Paddle Peak, and even a parachute jump. 

“I would like to thank all of my family and friends who have been a massive support system over the years – without them I would never have been able to raise this amount of money for MDUK.  I want to wish everyone running this year’s marathon the very best of luck and if you see me, I will hope to support any of you with your run and we can all help everyone in the Muscular Dystrophy community. 

“Now let’s get out there and do it for MDUK.” 

Thank you from MDUK  

We are so grateful to all of our fantastic runners for choosing to take on this feat for Muscular Dystrophy UK. We wish you all the very best of luck and we’ll be supporting you every step of the way. 

If you have been inspired by our London Marathon runners, why not challenge yourself to go the distance for MDUK and sign up for an event today