We all want to make a difference, but few of us have what it takes to take the brave step of giving up a successful career to make change happen. Emily Crossley was happy in her career as an Anchor and Correspondent for Channel 4 News and CNN International when her world was turned upside down by her three-year-old son’s sudden and unexpected diagnosis of Duchenne Muscular Dystrophy.
Together, with the support of her husband, she decided to leave her career in journalism and set up her own charity. Utilising her network and skills as a producer and journalist, Emily runs her charity, Duchenne UK, like a business, raising millions of pounds to fund and accelerate clinical research both in the UK and globally. Emily talks to The Fold about her emotional journey and how thinking on her feet was key to getting the charity off the ground.
You founded the Duchenne Children’s Trust in 2012 after your son’s diagnosis. Can you tell us a bit more about Duchenne and the charity?
There are around 2,500 patients in the UK and 300,000 worldwide. Around two families a week in the UK are told the awful news that their child has Duchenne Muscular Dystrophy.
My son was three and a half when he was diagnosed. It came completely out of the blue, and opened my husband and I up to a world of grief and despair we hadn’t known was possible. At first it was unbearable to even say the words: Duchenne Muscular Dystrophy. They symbolised such heartbreak and devastation. It took us a year to get ourselves together and gather the strength to begin the long and challenging journey of setting up our patient group, the Duchenne Children’s Trust.
We set up the Duchenne Children’s Trust 5 years ago, and Duchenne UK was formed last year after we joined forces with Joining Jack, another DMD research charity based in Wigan. We work on everything together.
Our mission is to fund and accelerate research to bring treatments to help this generation of patients. And we’ve never been more hopeful. Duchenne UK, together with Joining Jack, has raised £10million in five years, and spent and committed £9million of that to actual research.
Being the parent of a child with a devastating and life-limiting illness
is a lonely, dark and frightening place.
What exactly is Duchenne Muscular Dystrophy?
Duchenne muscular dystrophy or DMD is a genetic (inherited) disorder that causes muscle weakness and wasting. The muscle weakness starts in early childhood and symptoms are usually first noticed between the ages of two and five years. The first signs are often when the child has difficulty getting up from the floor, walking or running. The weakness progresses through childhood and adolescence, eventually affecting all the muscles used for moving, breathing and the heart. Duchenne mainly affects boys but girls can be affected in rare cases. The name Duchenne comes from the doctor who first described the condition.
Those with Duchenne do have shortened lives, it is unusual for someone with the disease to live beyond their 30s. However, advances in management of the condition are increasing life expectancy and enabling more young adults to lead independent lives.
Can you tell us a bit about your career and the moment you decided to set up the charity?
I was happy in my career as an Anchor and Correspondent for Channel 4 News and CNN International. But after Eli’s diagnosis I felt that I had no choice but to set up the charity.
It was a huge decision to leave, I had no fundraising or charity experience at all. It was really nerve-wracking but we felt we could make a difference between life and death, through the money we’d raise – that’s our goal and what keeps us going.
How did you go about getting the charity off the ground?
I would say that the most important thing was to get the best advice possible right from the start. I am fortunate to have a good network. Friends of ours were so generous with their time and money, and opened doors to some incredible people. From brilliant web designers to influential figures from the advertising world to help me get the launch and the message of the charity right. From the beginning, I had an unbelievable group of Trustees – strong, intelligent women, with a range of experience and expertise both in fundraising, branding and in the duties & obligations of a charity in terms of governance and financial conduct. They worked so hard for us at the start and we wouldn’t be where we are today without them.
My own work network also turned out to be key. I gave up my job as a TV reporter and presenter, believing that the skills would be non-transferable. I was wrong. It turned out that communications are absolutely essential to any foundation. And my former friends and colleagues in broadcasting have been remarkable in what they have done to help the charity raise money and awareness.
I’m not very good at things not going to plan! I had to always think on my feet as a producer and journalist so I’m used to last minute changes and coping with them.
What is the focus for Duchenne UK?
Our overriding focus is to deliver treatments to this generation of patients with DMD. The drug development path is fraught with obstacles and challenges but I would like to say that within two years we will be close to getting a new treatment for patients as a result of the trial that we are funding and the many other projects we are supporting.
What does a typical weekday look like for you?
There’s no typical week but the themes are constant – managing the three children’s commitments, trying to see them as much as possible, whilst juggling the many things the charity is working on. I often have to travel to attend meetings and conferences. We have a skeleton staff, so I am very much a “doing-CEO”.
How do you remain calm and collected when something doesn’t quite go to plan?
I’m not very good at things not going to plan! I had to always think on my feet as a producer and journalist so I’m used to last minute changes and coping with them. Also, I have an amazing husband and my mum lives very close by and is such a strong support. I know that I can always fall back on them if something goes wrong.
The greatest piece of advice I’ve been given, is to run my charity like a company. Be driven, ambitious, and absolutely focused on your mission
What’s the hardest thing about managing a charity like Duchenne UK?
Being the parent of a child with a devastating and life-limiting illness is a lonely, dark and frightening place. Add to that the demands and responsibility of running a patient group, and you can sometimes feel overwhelmed. I genuinely don’t believe I would have had the strength to stay in the fight, without meeting some extraordinary women: Alex my co-founder of Duchenne UK and Kerry Rosenfeld and Annie Ganot. I have also been so unbelievably moved and strengthened by families – who are lost in the grief of early diagnosis – who reach out to us and want to help by fundraising. I know that I’m fighting now, not just for my son, but for an entire community and that keeps me going.
You’ve raised a huge amount for the trust in its first five years, how do you keep momentum?
All of the money we raise goes directly to research. Our focus is on funding clinical trials for drugs that can help this generation of patients with DMD. We are funding one trial, due to start next year, and we have two other drugs that we also want to take into clinical trial. We are working on so many exciting projects.
Our annual bike ride, the Duchenne Dash will be in its 6th year next year. This year the ride raised a staggering £1million (with only 160 riders) so we are hoping to repeat that next year. This had traditionally been quite a male event, but we have had lots of incredible women take part.
We are hosting a big fundraising dinner next year and we are very lucky to have the support of many families who fund-raise for us.
What’s your proudest achievement?
Seeing how the money we’ve raised really is helping to accelerate research. In 2015, along with Joining Jack and the Duchenne Research Fund, we invested $5million in a US biotech, to help them develop a gene therapy drug. They are going to be testing this treatment on boys very soon and I feel so proud of being a small part of helping to make that happen.
I’m proud of building a charity that is helping to bring hope to people in their darkest hours. My co-founder Alex and I were honoured by the Prime Minster recently as part of the Points of Light Award, and it was the lovely messages from families thanking Alex and I for the work we’re doing that meant so much.
What’s the greatest piece of advice you’ve been given?
To run my charity like a company. Be driven, ambitious, and absolutely focused on your mission so that you can look your donors in the eye and tell them with confidence that you are doing the very best thing possible with their support to fund and accelerate research.
How do you like to wind-down in your free time? If you manage to get any!
I can’t really remember when I last had some free time! When I’m not working I want to spend as much time as I can with my children and my husband. I try to go to the gym when I can and I’ve recently joined a choir – which is really good for clearing the mind.
Three ways we could be more productive today?
1. Finding a way to manage email!
2. Meditation – when I have time, this helps me prioritise.
3. Surround yourself with caring, dynamic and effective people you trust to deliver your vision with you.
Earthly Powers, Anthony Burgess
Who inspires you?
There are three strong inspirational women in my life who give me the strength to fight every day: Alex Johnson, Annie Ganot and Kerry Rosenfeld.
Job satisfaction is….
Seeing trials happening and patients taking part in research as a result of our funding.
London top five?
I absolutely love London, mainly because my top 5 things change all the time – there is so much to do.
1. Running along the river in Hammersmith
2. Sunday Dim Sum with the family at Royal China on Baker Street
3. Taking the children to the Olympic cinema in Barnes
4. Walking on Hampstead Heath
5. The Barbican – my dad used to play violin with the London Symphony Orchestra – I love going to listen to their concerts