Diagnosed with Limb-girdle muscular dystrophy type R1 (LGMDR1) at just 18, Michael McGrath MBE refused to let the muscle-wasting condition define his future. Instead, he became the first disabled person to lead expeditions to both the North and South Poles, founded the multi-award-winning Muscle Help Foundation, and has built a successful career as a professional speaker, inspiring audiences on resilience, leadership, diversity and overcoming adversity while helping children and young adults living with muscular dystrophy achieve life-changing Muscle Dreams.
In this exclusive interview with Crip Life™, Michael speaks to our editor Emma Purcell about receiving his muscular dystrophy diagnosis, transitioning to life as a wheelchair user, leading record-breaking polar expeditions, building a national charity, challenging ableism, and why he believes a person’s condition should never determine what they are capable of achieving.
Michael McGrath MBE on being diagnosed with muscular dystrophy
“In an instant, my life changed forever”. The words of Michael McGrath as he described the moment he was diagnosed with a form of muscular dystrophy just as he turned 18 years old.
Describing his diagnosis as his “Cast Away moment”, the now 60-year-old from Hampshire said: “You might be familiar with the film Cast Away starring Tom Hanks. He plays a character called Chuck Nolan who after a FedEx cargo plane crash, survives alone on a remote island, where he befriends and talks to a volleyball named Wilson. After four years, he’s rescued. The final scene of the film sees him delivering an unopened FedEx package back to its sender with a note simply saying that the package had saved his life. At the end of the film, he puts a map out on the hood of his truck, he looks north, south, east and west, unsure, which direction to head. That’s my Cast Away moment!”
“For me, that really articulates my diagnosis moment, because I had no idea what my direction was going to be, and how I would navigate my life moving forwards from that moment on.”
As a child, Michael was fit and active, competing in many physical sports, but as he continued to explain, “in the next breath, all of those things basically stopped. I needed to navigate life differently.”
“The emotional journey’s been interesting, because you’re 17 and a half, 18 years old, your life’s ahead of you and in this moment in time. I was beside myself, and I think I blamed anyone I could blame, quite frankly, including the good Lord up above, and said, ‘Why me? Why me?’. It was a bit of an emotional rollercoaster, of course, particularly for my mum, who was the carrier of a mutant gene.
“But I’ve navigated through that period of diagnosis and found a pathway that works for me, and that allows me now to support other people on their journey going forward.”
He added: “The other piece of the jigsaw is the conversation around mental wellness, and in that moment in time, 15, 20, 30 years ago, people weren’t talking so openly about mental wellbeing. It’s very much a thing now. It’s very much a conversation, and long may that continue.
“Nowadays, I have the mindset of get on with your life, with what you have around you, and explore what you’re capable of doing. So that I suppose is who I am.”
Read: Disabled People Also Need To Talk About Mental Health
What is Limb-girdle muscular dystrophy type R1?
Michael has the condition Limb-girdle muscular dystrophy type R1 (LGMDR1), formerly known as LGMD2A, which causes progressive muscle weakness and wasting in the hips, thighs and shoulders. It is caused by mutations in the CAPN3 gene.
Michael shared how he was originally diagnosed with Emery-Dreifuss syndrome, but after further biopsies, it was changed to LGMD2A, which was later reclassified as LGMDR1.
Giving more details on his form of muscular dystrophy, Michael said: “The protein that is deficient in people who have LGMDR1 is calpain, which means, and the clue is in the name – limb-girdle – your primary girdles, your primary muscle groups that come off your shoulder girdles and your hip girdles are impacted. Fortunately, I’ve got to keep a bit of an eye on my heart, and just make sure that it keeps doing what it needs to be doing.
“I know for other people with LGMD, the condition manifests itself in many different ways, and what’s really interesting is that years ago, there were only five variants or so, and now there are over 25 variants of limb-girdle muscular dystrophy. Never mind Becker muscular dystrophy, congenital muscular dystrophy or Duchenne muscular dystrophy.
“With limb-girdle muscular dystrophy, there are well over 25 different variants, and that’s as a result of the advancement of neuromuscular research and the scientists and researchers who are continually trying to find ways of combating these conditions.”
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“Walking is overrated”: transitioning to be a wheelchair user
For most people living with a muscle wasting condition, as the disease progresses, their mobility deteriorates, leading them to become a wheelchair user. For many people, this transition can be challenging, difficult and bring a sense of denial.
However, for Michael, he has managed to embrace this with positivity and determination:
“I’ve transitioned from once upon a time being upright to spending a couple of years really fighting to stay upright. Then from zimmerframe to manual wheelchair, and then manual wheelchair, transitioning to powerchair.
“I would say to anyone that wishes to have a conversation with me about using a wheelchair, be it manual or powerchair – walking is overrated.
“Certainly from where I sit, and from the conversations that I’ve had recently with young people with muscular dystrophy, one or two of whom are just exploring what that journey looks like in terms of getting a powerchair. I said, ‘I promise you, you will not look back. Once you’ve accepted that position, the world is your oyster’.”
Read: “My Struggle For Access”: A Disabled Medical Student’s Fight For Accessible Higher Education
From muscular dystrophy diagnosis to leading polar expeditions
Following his muscular dystrophy diagnosis, Michael made history 20 years later by becoming the first disabled person to lead expeditions to the North and South Poles.
After reading about Christopher Cope, who was planning an expedition
to the North Pole to raise awareness and money for the Muscular Dystrophy Campaign (MDC), Michael, who was at that time a Trustee for MDC (today known as MDUK), contacted Chris, who worked for a London-based property management company. After meeting Chris, it was agreed that Michael would raise his own operating costs, recruit his own expedition team and then join Chris. The rest as they say, is history.
Speaking more about the expeditions, Michael said: “These two moments in time were transformational. They absolutely changed my life forever… The Arctic North Pole was April 2002, and the Antarctica South Pole was in January 2004.”
“I remember when we actually got to 90 degrees south of the South Pole, we did an assisted walk. I was lifted out of a sledging system, and arm-in-arm, walked one step at a time, 310 meters.”
It was the equivalent of around 100,000 steps, and each step represented an individual with muscular dystrophy across the globe, according to data conducted by MDUK at that time.
He added: “Those experiences have really underpinned and provided the social currency for what is today the Muscle Help Foundation charity that was established in March 2003… So, it’s very much rooted in the work that we do.”
Read: Ollie Thorn: Paralysed Man Becomes First Person To Handcyle To Everest Base Camp
The Muscle Help Foundation: providing life-affirming and transformational experiences for people with muscular dystrophy
The Muscle Help Foundation (MHF) charity is based in Clanfield, Hampshire, and supports children, young people and adults living with muscular dystrophy across the UK with highly personalised, transformational wish-fulfilment experiences called Muscle Dreams.
Michael describes the Muscle Help Foundation as an organisation that is “providing moments in time, interventions and experiences that are life-affirming, and, in some cases, transformational. It’s not just about uplifting confidence and improving self-esteem, but also it’s about social connection and bringing families who are otherwise blighted by isolation and feelings of being alone and disconnected from society, and bringing them into our world.”
MHF’s in‑person and virtual Muscle Dream interventions occur throughout the year. From accessible powerboating and flying to its immersive flagship Porsche programme, which this year marked its 15th anniversary at Silverstone, to virtual wellbeing sessions that support mental wellness and emotional resilience.
Additionally, the charity’s singular one-to-one bespoke moments-in-time have seen beneficiaries mix it up with animals by being ‘the zookeeper’ for a day, bushcraft & survival skills with Ray Mears, and hanging out with stars including F1 racer Lewis Hamilton and comedian Harry Hill.
Each experience supports the family with contributions to travel, allowances for hotels and subsistence, but they are meticulously designed to uplift confidence, ignite possibility, reduce isolation and enhance social connection.
If you know a child, young person or adult aged 8 to 35 living with muscular dystrophy or an allied neuromuscular condition who could benefit from a life-changing Muscle Dream, you can submit a nomination online. Nominations can be made by the individual themselves, family members, friends, carers, healthcare professionals, social prescribers, schools or hospices. Simply complete the online nomination form with details about the nominee, their condition and why they would benefit from the experience. To find out more and submit a nomination, visit the Muscle Help Foundation’s Muscle Dream nomination page.
A Muscle Dream beyond meeting Al Pacino
One memorable Muscle Dream for Michael was giving a 27-year-old aspiring journalist and film fanatic, Suhayl, who was from Edinburgh and lived with Duchenne muscular dystrophy, the opportunity to interview the godfather of movie icons, Al Pacino.
Thanks to the generosity and support of one of MHF’s patrons, Sir Kenneth Branagh, he opened a door for Michael to engage with Mr Al Pacino’s publicist.
Michael said: “It took about a year to knit this all together, but essentially Mr
Pacino was receiving a Lifetime Achievement Award at the BFI, the British Film
Institute, in London. So, we brought this family down from Edinburgh on the
train into London. They stayed at the beautiful five-star Corinthia Hotel in Whitehall
for three nights. The team at the hotel were phenomenal.”
“The moment arrived when Mr Pacino arrived with his entourage… and I’m not kidding you, he is like a long-lost uncle. He was so genuine, and so warm, and so compassionate in his demeanour, and how he interacted with Suhayl was beautiful. They had a conversation for the best part of an hour and a half. It was surreal, in every sense of the word.”
Suhayl knew his movies, especially Al Pacino’s, and he even got the opportunity to role-play a couple of titles with the iconic filmmaker, including The Godfather and The Devil’s Advocate.
This Muscle Dream didn’t end there for Suhayl when he was given a written transcript of his exchange with Al Pacino and was encouraged to write up an article about his experience. A few weeks later, Michael was asked if he could proofread Suhayl’s article, but instead he managed to arrange for Scottish crime writer Ian Rankin to meet with Suhayl in Edinburgh and review his writing. Sadly, a few weeks later, Michael received the news that Suhayl had passed away.
Read more about Suhayl’s Muscle Dream experience with Al Pacino.
Reflecting further on this particular Muscle Dream, Michael said: “It is probably one of our highest profile Muscle Dreams because everyone knows the movie star, Al Pacino. But actually, it was so much more than just meeting Mr Pacino.
“I think the takeaway is that we build a relationship with all of our families through the intervention of an experience or a moment in time. Those families then stay connected with the charity. They form part of the wider community, become part of that whole shared sense of belonging, that tribal community of Muscle Warriors that we’ve worked hard over the years to embed, not only the values of the charity, but also that sense of togetherness, and that sense of support.”
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Muscle Help Foundation extends maximum age eligibility for its Muscle Dream Programmes
In June 2026, the Muscle Help Foundation announced that it has extended the maximum age eligibility for its Muscle Dream Programmes from 28 to 35 years of age.
This change reflects the increased life expectancy of those living with muscle‑wasting conditions, alongside growing demand from individuals over the age of 28 who wish to access the charity’s programmes.
The first recipient over the age of 28 took part in MHF’s first-ever Flying Muscle Dream Programme. Explaining more about this, Michael said:
“We delivered our first Muscle Dream for a 34-year-old who has Becker muscular Dystrophy about three weeks ago, and it was amazing. It was a joyful thing to see, and be a part of, and to witness, and also to have a conversation with this 34-year-old, and to say, by the way, you’re our first over the age of 28.
“In fact, so much so that he wants to fly more and he’s developed more of an interest, a potential hobby in flying, which would be absolutely amazing.”
Read: Dylan Kelsall: Growing Powerchair Football And Leading Leeds PFC To The 2026 Disability FA Cup Final
Why is communication important for people with disabilities?
As well as the Muscle Dream Programme, MHF is also known for creating the Muscle Warrior powerchair football team and supporting the Wheelchair Football Association. The charity also provides a Wellbeing outreach programme and bereavement research.
Discussing more about the importance of wellbeing, Michael said: “Somebody asked me about those wellbeing programmes and is there a particular attribute over and above resilience, confidence, self-esteem, or whatever, and I said, well, actually, there is – it’s called communication. If we can enable or help to show a young person that ability to communicate effectively will be such an important asset to them throughout their lives, that must be a good thing. So, for me, that ability to be able to communicate with confidence, to communicate persuasively, to communicate authentically, that’s a real asset in my mind.”
He added: “As people with disabilities, I know, will testify, we have to be good at form filling, and we have to be good at defending our position constantly. All of these things that are sometimes hard and difficult and challenging. We need to navigate these conversations thoughtfully, and if they can be navigated compellingly and communicated truthfully and compellingly, then that’s a good place to be for the future of young people with disabilities going forward.”
Michael also uses his powerful communication skills as a professional speaker and is invited by private, public and third sector organisations to speak at conferences, events and away days in addition to delivering bespoke masterclasses – current prevalent keynote topics include: resilience, leadership, change, risk, teamwork, diversity and overcoming adversity.
One of his most recent speaking engagements was to Blackpool Teaching Hospitals NHS Foundation Trust, which had recently come out of special measures, to deliver a speech at their inaugural Leadership Congress.
Describing why it was a memorable speech, Michael said: “It was memorable because I was really tested in terms of the brief that I received from the CEO of this particular trust. It required quite a lot of effort and thought to create something bespoke and something that was tailored to their message, but also to make sure that their desired outcomes were not just achieved, but surpassed, which is what I try hard to do in all of my engagements. It was memorable because it was probably one of the most challenging speaking briefs that I’ve received to date.”
Michael went on to compare the difference between an audience of adults and an audience of children at speaking engagements, giving one example of a time he did a talk with five to seven-year-olds at a Beavers scout group:
“I was telling them a story about Muscle Dreams, about disability, the number of muscles in the human body, why the number 657 is so important, and about polar bears, penguins, the North Pole, and the South Pole – the questions young people ask are much more direct and unfiltered than adults tend to ask.
“I’ll never forget questions like, ‘How do you go to the toilet at the North Pole?’
or ‘Why don’t your legs work properly?’ or ‘What’s wrong with you?’, and on occasion from adults, this stunning ableist question still asked to this day, often directed to my wife, ‘Does he work?’!”
Read: My Voice: A Podcast Giving A Voice To Disabled People From Ethnic Minorities And Beyond
Michael McGrath MBE on his awards and recognitions
Michael has received widespread recognition for his charity work, business achievements and pioneering polar expeditions. He was named among Britain’s Power 100 most influential disabled people for four consecutive years (2016–2019), awarded an Honorary Doctorate of Arts by the University of Hertfordshire, appointed a Deputy Lieutenant of Hertfordshire, and became a Fellow of the Royal Society of Arts. His honours also include The Big Heart Award, the Inspiring Communicator National Award, Unsung Hero, and multiple Inspiring Herts awards for the Muscle Help Foundation. Michael was also a London 2012 Paralympic Torchbearer and recognised by Queen Elizabeth II for his contribution to national life.
But his proudest moment of all is being awarded an MBE in the King’s Birthday Honours List in June 2023, for Services to People with Muscular Dystrophy and receiving it from Princess Anne in June 2024.
Michael said: “Receiving an MBE at Windsor Castle with my wife, daughter, my nearly 90-year-old mum, and with my granddaughter all present was extraordinarily special, and memorable, and a moment in time that I shall never forget.”
He added: “It’s not a cliched expression, but it’s important within the context of this conversation that when I think about all of the families and all of the beneficiaries and the lives that have been touched over the last 24 years or so, it’s a body of work that I am incredibly proud of but truthfully, I simply could not do this work without the lifeblood and the army of volunteers, and so many people that have supported us over many, many, many years.”
Read: 10 Influential Disabled Fathers Proving They Can Be Active And Loving Parents
Using lived experience to change perceptions of muscular dystrophy
As a long-standing advocate for diversity and inclusion, Michael has written thought leadership pieces on workplace authenticity, leadership, disability and sport. Drawing on his own experiences, he has reflected on being described as “an inconvenient truth” by a friend and even being referred to as “a technical fault” during a train journey after needing an unscheduled toilet stop. These moments highlight the ableist attitudes disabled people can encounter and have shaped his approach to challenging perceptions and driving meaningful change.
Reflecting on how those experiences have influenced his approach to challenging ableism and driving change, Michael said:
“I think there is always considerable room for improvement. I think that those that are out there campaigning, advocating, ensuring that the voices of people with disabilities are not just heard, but also listened to, and there’s a difference. I do think that the way that some go about campaigning and championing needs to be considered thoughtfully. There is a way of engaging hearts and minds, particularly those that are in power, who can influence and enact change. I believe heartily that there is a way of doing that. So that’s my observation.”
He added: “We have to become more tolerant as a society. We have to understand what sits behind the words, ‘kindness and compassion’. We have to start listening more to the voices of those with lived experience, because we don’t. Even the phrase, ‘lived experience’, when I think about that, 10 or 15 years ago, it wasn’t a thing. It just wasn’t a phrase. Now it’s become a phrase. I wonder what the phrases will be in the next five or ten years. What will be the thing that people are talking about? How will disabled people be badged or referred to?”
Michael concluded with some very valuable advice for other people living with muscular dystrophy:
“Your condition doesn’t write your future. You do. You’re in control. To young people, don’t be afraid to dream big. But also, don’t be afraid to prepare well and accept support when you need it.
“Your journey may look different from someone else’s. But it can still be extraordinary. By extraordinary, I don’t mean necessarily going off to the North and South Poles… If you can inspire even one person by refusing to give up, you’ve already made a difference.
“I would hope that would capture some of my traits around being optimistic, but with a practical outlook underpinned by my own life experiences – by my polar adventures, my professional speaking, and certainly being an advocate for those people living with muscular dystrophy.”
Follow Michael McGrath MBE on LinkedIn.
To find out more about the Muscle Help Foundation and how you can support the charity or get involved, visit the MHF website or follow on Facebook, Instagram, TikTok, LinkedIn, and YouTube.