Personal stories

International Women’s Day: World's Strongest Mothers

Today, on International Women’s Day, we want to pay tribute to the World's Strongest Mums – those who we have met on our journey since our own sons were diagnosed. And those who we haven’t met but with whom we stand side by side, in our fight to end Duchenne.

Many of you have got behind our World’s Strongest Boys campaign – which we’re so grateful to you for - because we feel like it is helping us reclaim the word strength and own it for our children. Because on first view, the World’s Strongest Boys seems a counterintuitive call to action, because Duchenne steals muscle strength.

But ALL OF US who live every day with the reality of Duchenne KNOW the challenges. The bravery our community display every day. The steely strength within our children to grasp life and live it to the maximum. We know they are the world’s strongest boys, and girls, and men and women. And if they’re going to be strong, we have to be too.

Thank you to all the World's Strongest Mothers.

Please read Emily's speech which she gave yesterday at an event at Barclays to mark International Women’s Day: 

Thank you for having me: It struck me that the theme for IWD - Press for progress – goes to the heart of what you need for success as a woman: it’s not a magic formula: it’s one simple word: resilience - to get up every day and fight the good fight. 

I shouldn’t be here today. This wasn’t the turn my life was meant to have taken.

8 years ago life was good. I was a reporter and correspondent for Channel 4 News and CNN. I had fought my way up from producer to reading & reporting on the news. It was a job I had always wanted. I almost didn’t make it. I remember one (Male) boss once saying to me: “Emily, less scatter, more brain: you don’t want to get the reputation as a lightweight”. I had a degree from Oxford. I also had blonde hair. The blonde hair counted against me more than the degree counted for me.

But I worked hard. I had a thousand nos. And then I got lucky - if you can call it that.

I was the first reporter on the scene when London was bombed on July 7th – I happened to be round the corner when Hasib Hussain blew himself up and murdered 13 other people.

Channel 4 News offered me a job.

I was breaking stories. I was starting to make a name for myself. One morning, one of the staff congratulated me and patted me on the back saying: now darling – just don’t go getting yourself bloody pregnant. The trouble was, I already was. I took a year off and delighted in my first born child, Eli.

I was excited to return to work. Less so when I was assigned my first story.

Many of you will remember the story of Baby P, brutally abused and murdered by his mother’s boyfriend at the age of 17 months. I sat through day after day of horrifying evidence – made all the more brutal to me because I was simultaneously living through my beautiful son growing up – laughing, smiling, cuddling and bringing out more love in me than I ever believed it possible for a person to give. But I wanted to prove that I could do the job.

And then, one day, my life took a devastating turn. Eli was diagnosed with Duchenne Muscular Dystrophy, a progressive muscle wasting disease, caused by a genetic fault on the largest gene in the body.

As he played in the corridor, the doctors told us he was would be in a wheelchair by 10, paralysed by his teenage years. And life expectancy could be early 20s.

My reaction to my son’s diagnosis was driven by my instincts as a woman and as a mother. To fight. With every cell in my body. To rage against the grief, the desperation, the powerlessness, the bitter and searing pain of that diagnosis. To rage. And to fight.

And I came back to that characteristic: resilience. Because I did have a choice: To be defined by Duchenne and what it would do. Or to be defined by my reaction to it: and in that moment, my reaction was to fight.

So my husband and I set up a charity. In 2016 we joined with Joining Jack to form Duchenne UK and between us, in 5 years, have raised £10million, and we are working and helping to change this landscape beyond recognition:

We decided early on that we wanted to make that money REALLY work and have impact along every stage of the drug development process – one that we know is complex and challenging.

So we have an innovative approach to funding. Not only do we fund basic research, but we fund ACTUAL clinical trials. We fund the doctors and nurses in the UK to deliver those trials: and we look at where ever possible, we can accelerate research and work with industry and regulators to get drugs approved.

The aim of our charity is very clear: we fund potential treatments that will help THIS generation with Duchenne.

We’re trying to make a difference to every stage of the drug development process - to leverage our involvement where we can. To bring funding, collaboration, drive and ideas to the areas that need it.

So there’s a notorious time period in drug development known as the valley of death, where promising treatments languish in laboratories because they lack the funding to get into early phase clinical trials. We invest in this early risky stage to accelerate drug development: In 2014, we invested $5million between us, Joining Jack and the Duchenne Research Fund into a US company, Solid Bioscience to help them develop their novel gene therapy programme.

The work was a success and the trial will start this year.

This is huge. When my son was diagnosed – we were told: Forget gene therapy – it’s too far away.

We’re also running our own clinical trials: looking at repurposing drugs where we test drugs already approved in one condition to see if it works in Duchenne. Our first trial will start on this in the coming months.

The final piece of the jigsaw puzzle is the challenge of reimbursement. And again here we are breaking new ground.

In 2014 the European Medicines Agency gave conditional approval to the first ever drug to treat a sub group of patients with Duchenne. This was a historic moment. But it took 2 years to get NICE to agree to pay for the drug.

And I realised in that moment that there is actually something worse than having NO drug for your disease. And that’s having a drug that’s approved for use but that is sitting on a shelf because no-one will pay for it. 

And it reminded me of a conversation I once had with a regulator at the FDA in the US who said: don’t bring me a room full of crying mothers. Bring me data.

So I got my crying mothers in a room. We cried. And then we turned those tears into action.

We came up with an idea called Project Hercules: to bring competing companies together – and together we can create one shared set of data that will make it much easier for companies to engage with bodies like NICE who make decisions about paying for drugs.

We hoped for 3 companies to sign up – we ended up getting seven!  This has never been done before, ever! The story has made headlines around the world.

In just 5 years we’ve grown from a tiny patient organisation to a multi-million-pound catalyser and funder of research bringing treatments and hope to this generation.

And what it comes down to is actually something women are very good at. Resilience.

Resilience to get through pregnancy. Resilience to survive childbirth. Resilience to survive breastfeeding. The resilience to leave your child at nursery for that very first morning. And the resilience, when you are told that your child is dying, to say NO. I will not accept that. I will not give into this.

As Maya Angelou said: “I can be changed by what happens to me. But I refuse to be reduced by it.”

This disease stole from us some of the luxuries of choice - But it couldn’t steal our hope. It couldn’t - and it won’t - steal our fight. 

Published on 3 August 2018

Share this article