Our CEO, Andy Fletcher, asks you to be part of our 10-year plan as we push for the changes we all long to see. Help bring us closer to a world without limits.
We’re now a few weeks into 2026 and I hope that the year has started well for you and your family. For me, a new year is always a time for taking stock and reflecting. And as I look back on my first full year as Chief Executive of Muscular Dystrophy UK, I feel immensely proud of everything we’ve achieved – with the help of supporters like you.
Today, I want to tell you about some of the inspiring work you’ve made possible and share with you our exciting plans for the future. Our supporters are a vital part of everything we do and we’re so very grateful for your kindness.
Over the past year, I’ve been lucky enough to see some of this kindness in action as I’ve travelled round the UK – meeting people in our community, listening to their stories and hearing about the difference we’re making to their lives.
Whether we’re helping with practical and financial matters, or providing much-needed emotional support, we’re here for these families through thick and thin. Last year, we reached more than 3,300 people through our helpline and provided over 130 grants for specialist equipment – and we simply couldn’t have done that without supporters like you.
But the sad fact is that life remains extremely tough for the over 110,000 people living with muscle wasting or weakening conditions in the UK. Healthcare is underfunded, support services are over-stretched. And all too often, people are dismissed, marginalised and let down by the very systems that should look after them.
We know that the cost-of-living crisis continues to hit our community hard.
“Ongoing changes to the welfare system and rumoured further cuts to benefits are making matters even worse – leaving many families struggling to get by and cover the essential costs that come with a disability.”
Living like this is draining – it takes its toll on people’s physical and mental health. Yet whenever I speak to families in our community and hear what they’re going through, I’m always struck by their resilience and determination.
They don’t want pity. They want action. Which is why we’ve set out a bold, ambitious plan to guide our work over the next 10 years – and why I hope you’ll get behind it today.
Our vision is ‘A world without limits’, where people aren’t constrained by their condition and are free to lead the lives they want. It’s been shaped by the lived experience of people in our community. And with their help – and yours – we’re determined to make it a reality.
Below, you can read more about the four strategic goals of this ambitious, far-reaching plan – and you’ll be pleased to hear we’re already making progress.
We will help speed up and improve the accuracy of diagnosis so that by 2035, no one will wait longer than six months to be diagnosed.
Our focus for the first three years:
- We will campaign for better newborn screening for relevant muscle wasting conditions
- We will invest in research into new indicators and diagnostic tools and better understand the prevalence of people with muscle wasting conditions
- We will educate thousands of healthcare professionals responsible for identifying potential muscle wasting conditions for timely referral
We will reach every person with a muscle wasting condition by 2035, so no one faces this journey alone.
Our priorities for the first three years:
- We will develop a new diagnosis referral service, with tailored support materials for people newly diagnosed with a muscle wasting condition
- We will develop a programme of in reach into neuromuscular centres and clinics, developing staff and volunteers to offer direct and peer support
- We will significantly increase awareness of muscle wasting conditions and the charity so more people can access support when they need it
We will help accelerate the development of new treatments so that by 2035 they will be available everywhere. And everyone will be able to access specialist support when and where they need it.
Our priorities for the first three years:
- We will fund groundbreaking research into new treatments and better understanding of muscle wasting conditions
- We will campaign and influence the NHS across the UK to end the postcode lottery and ensure there is capacity in the system to treat and support those who need it
- We will support the growth of neuromuscular services and workforce through education and quality improvement
We will campaign for a more equal and accessible world and directly support every person who needs it by 2035 to live independently with better physical and mental health.
Our priorities for the first three years:
- We will significantly grow our direct services and review our existing model of support to reach more people with practical and emotional support
- We will campaign for a more just and inclusive society with accessible services and state support to live a full life
- We will grow our community of people affected by muscle wasting conditions to improve self-advocacy and peer support
For instance, one of our top priorities is improving access to new treatments – like givinostat for Duchenne muscular dystrophy, which was approved for use in Scotland last year. This life-changing treatment helps slow the progression of this condition and improve quality of life, giving families more precious time together.
So we’re determined to keep up the momentum, bring about wider change and make sure givinostat and other emerging treatments are available across the UK, no matter where you live. But we can’t do this alone. We need everyone – healthcare professionals, policymakers and researchers – to play their part. And I hope we can count on your support too.
If you’re able to make a gift or set up a regular donation, you’ll help us forge ahead with our 10-year plan and push for the changes we all long to see. You’ll bring us closer to ‘A world without limits – and what could be more inspiring than that?
Right now, I feel we’re on the cusp of real progress and I’m excited by all that the new year has in store. I hope that 2026 will be an equally positive year for you and your family – we’re so glad you’re part of our community and very grateful for all your support.
Yours sincerely,
Andy Fletcher
Chief Executive Officer
P.S. By giving a donation today, you could help us put our ambitious 10-year plan into action and make a lasting difference to people with muscle wasting conditions. Thank you in advance for your kindness.