We recently announced that we are joining forces with Muscular Dystrophy UK (MDUK) to find novel therapies for facioscapulohumeral muscular dystrophy (FSHD) – a genetic condition that causes muscle-weakening and wasting in the face, shoulder blades and upper arms. We caught up with Dr Kate Adcock, Director of Research and Innovation at MDUK to learn more about the organisation and the challenges facing those living with muscular dystrophies.

Hey Kate! Can you tell us a bit more about Muscular Dystrophy UK and its work?

Founded in 1959, Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to fight muscle-wasting conditions.

We are the only charity to encompass the over 60 rare and very rare progressive muscle-weakening and wasting conditions, which affect about 70,000 of the UK’s children and adults. We support high quality research to find effective treatments and cures and we won’t stop until we have found them for all muscle-wasting conditions.

At the same time, we offer practical and emotional support for people with a muscle-wasting condition and their families at every stage.

That’s amazing – you’re doing such important work. So what is your role within MDUK? How did you get to where you are now? 

I am the Director of Research and Innovation. Since joining MDUK in the summer of 2018 I have reviewed the charity’s research strategy and initiated a three-year plan to accelerate the search for effective treatments. I have also focussed on building partnerships with both UK and international organisations such as other funding bodies, charities and companies. Healx is the most recent, and one of the most important, of these new relationships.

Before MDUK, I was Head of Neuroscience and Mental Health with the Medical Research Council, and have also worked at a senior level at the Wellcome Trust. I gained a PhD in Neuroscience from the University of Cambridge following a first degree at Imperial College London and have worked as a post-doctoral assistant at both the University of Basel and in the Department of Diagnostic Imaging at the University Children’s Hospital in Zurich.

What a journey, and what a great role to be in now at MDUK! What do you think are the biggest challenges facing patients and families living with muscular dystrophies at the moment?

For most neuromuscular conditions there is no available treatment so a key challenge for our families – which often continues for many years – is to stay focused on making every day count. I am always struck by the fantastic fund-raising efforts that so many families undertake towards funding research into finding treatments and cures. We have countless examples of how our incredible community manages to turn daunting and tricky situations into positive, cheerful lifestyles, even during the pandemic.

But we are also acutely aware of the impact that shielding and lockdown has had on families. It has been hard, and whilst many are welcoming the opportunity to be able to see friends and family again soon, many people are concerned and anxious about the increased risks that they will encounter.

That’s understandable. With that in mind, what’s the most important thing you’re working on right now?

The Healx partnership is one of the most exciting things we are involved with, but our part in calling on the government to match-fund research is perhaps the most important at the moment. The Coronavirus pandemic means that we will lose £2.8m of income this year – that’s about half the money we had hoped to spend on charitable activity. Because of this, we are having to make changes to focus on our core objectives: supporting research, access to healthcare and treatment, and providing direct support to people living with muscle-wasting conditions and their families. We are a member of the Association of Medical Research Charities (AMRC) which is working to lessen the impact of the reduction in research, as budgets reflect the catastrophic effect the pandemic is having on charities like us.

The AMRC is urging the government to create a Life Sciences Charity Partnership Fund. This would be a co-investment scheme between the Government and charities to provide a level of match-funding from government for future charity research over the next three years. The fund would aim to preserve medical research charities’ unique and vital contributions to the UK’s research base and economy.

What are you most excited about regarding the new partnership with Healx?

We are genuinely excited about this new collaboration and look forward to working with Healx to identify potentially promising therapies for FHSD and possibly other muscular dystrophy conditions in the future. Healx’s vision and drug discovery expertise, when combined with our insight, networks and experience, has the potential to drive vital research forward and accelerate access to treatments. Partnership with a world-leading partner like this thoroughly reflects our commitment to making every day count for people with muscle-wasting conditions by supporting vital research.

Now for something a bit lighter, what was the last book you read?

I’m reading Dear NHS: 100 Stories to Say Thank You, Edited by Adam Kay. It’s joyous and heartbreaking in equal measure.

A great choice! What does a typical day look like for you?

Well, my days have changed a lot since mid-March! I live in Tunbridge Wells, so like many of my townsfolk I’d be on a train to London not long after 7am and be home sometime after 7pm. Nowadays I have a bit of a lie in and am at my desk around 8am. I deal with emails and take a look at Twitter. Then for much of the day I will be participating in video calls (I like that I rarely use the phone any more – it’s great to be able to see fellow callers on screen as we talk). I usually log off around 6.30pm and spend some time in my garden, which has never looked as wonderful!

That sounds great! Lastly, what’s the best piece of advice you’ve been given?

Take the opportunities that come and make the most of them (because no one else will do it for you).

Thank you Kate for taking the time to answer our questions. If you’d like to learn more about Healx’s collaboration with Muscular Dystrophy UK, please click here.