Make a difference

As the new Chief Executive of Muscular Dystrophy UK, it’s been a busy time for me, but I’m delighted to be heading up such an amazing organisation and excited about the opportunities ahead.

Like you, I care deeply for families affected by muscle wasting and weakening conditions, and I share your determination to make a difference. I’ve spent 25 years in the voluntary sector – most recently, at a children’s palliative care charity – and have worked with young people with these conditions for over a decade.

In that time, I’ve seen how tough life can be for them and their families – and right now, it’s never been tougher. The cost-of-living crisis has hit people with muscle wasting conditions harder than most, making it more expensive to travel to medical appointments, power specialist equipment like electric wheelchairs and pay for essential home adaptations.

These increased costs – combined with cuts to the government support available – are piling on the pressure for many families and bringing yet more worry to their already stressful lives.

It’s an incredibly difficult situation and I’m sure you’re as concerned about it as I am. But with the help of you and your fellow supporters, we’re doing everything we can to lighten the load on families – helping them to access the support they need, get grants for specialist equipment and afford the vital home adaptations that could make everyday life less of a struggle.

In the months and years ahead, we’ll continue to provide this kind of life-changing support and aim to reach even more families through our vital helpline and other advice services. 

But in my role as Chief Executive, I also want to go further and bring about bigger changes in the way our society treats disabled people. I’ll never forget meeting the mother of a boy with a muscle wasting condition, who told me:

“I wouldn’t change anything about my son – he’s perfect. It’s the system around him that’s the problem.”

To my mind, she’s absolutely right.

Our society often neglects the needs of people with neuromuscular conditions, leaving them without the support and services they so desperately deserve. But I’m a campaigner at heart and I believe we need to shout louder and be bolder to get the voices of our community heard.

With a relatively new government in Westminster, we have a real opportunity to influence policy and help build a better welfare system – so with your support, I’ll be doing everything I can to make that happen.

I’m also incredibly excited about the research projects we’re funding this year and the potential treatments that could come out of this pioneering work. I’m thinking of projects like the one underway at University College London, where Professor Francesco Saverio Tedesco and his team are exploring whether the shape of the control centre of muscle cells impacts the storage of DNA in people with rare genetic disorders called laminopathies.

The project could help scientists better understand the causes of laminopathies, such as limb girdle muscular dystrophy, Charcot-Marie-Tooth disease, Emery-Dreifuss muscular dystrophy and LMNA-related congenital muscular dystrophy. Ultimately, this research could help to develop new treatments to manage these conditions – transforming life for all those affected. But this kind of research relies on the generosity of people like you – which is why I’m asking if you’d consider supporting us once again today.

If you’re able to make a donation, it will help us forge ahead with vital research and bring us closer to the next big medical breakthrough. It’s an amazing thought, isn’t it?

Whatever you can spare – and however you support us – we’re incredibly grateful for all your kindness. As I settle into my new role, I feel lucky to have a great team around me, a clear mission to guide me and the support of people like you to inspire me.

So thank you once again for your compassion.

Yours sincerely,

Andy Fletcher
Chief Executive Officer

P.S. By starting the year with a gift, you could help us fund groundbreaking research into muscle wasting conditions over the coming months. Thank you in advance for your kindness.