We're all Joining Jacks fight against Duchenne Musculare Dystrophy, are you?

Parents Diaries

In the past four years, and with the help of our supporters, we have come so far in our journey. The road is long and the going is difficult, but we know that we can’t give up – Jack, and the thousands of other boys out there affected by DMD, need us to continue our fight. We are determined to continue to do all that we can to raise awareness, money and ultimately to find a cure for Duchenne Muscular Dystrophy. Join us in our fight, and follow our journey here.

Five years on


Date: 17/10/2016

Five years on

Five years on from Jack's diagnosis

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Solid Science Summit


Date: 14/05/2016

Solid Science Summit

It’s a strange question to ask someone like me. I think it's pretty obvious. But here’s another question: Does your motivation change? And the answer, I think, is yes. Yes I think it does. Well it certainly has done for me.

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My email to Federal Drug Administration


Date: 27/04/2016

My email to Federal Drug Administration

A personal perspective on the U.S. Federal Drug Administration’s Advisory Committee meeting for Sarepta Therapeutics exon 51 skipping Drug Eteplirsen by Alex Johnson mother of eight year old Jack Johnson who suffers with Duchenne Muscular Dystrophy.

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A Call to Action


Date: 30/01/2015

A Call to Action

Can the government show its commitment to patients with rare diseases by making an exceptional decision for the 80 boys for whom this treatment may otherwise not be available until too late? While guaranteeing that this situation will not arise again and that other rare disease indications will be speedily addressed in a streamlined and fair process in the future. There are four things we urgently need to draw your attention to and need your help with!

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Guest Blog by Ruth Le Gal


Date: 13/12/2014

Guest Blog by Ruth Le Gal

Leo was 5 when I realized that there was something wrong with his legs. As a physiotherapist I knew a little bit about Duchenne Muscular Dystrophy, and it only took me a few minutes of researching on the internet to work out that he was almost certainly going to be diagnosed with this horrific and devastating illness.

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Frustration is building


Date: 14/11/2014

Frustration is building

Why the Duchenne community needs to work faster.

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Early Access to Medicine Scheme


Date: 14/03/2014

Early Access to Medicine Scheme

Friends We ARE making a difference, and we couldn't have done it without you. THANK YOU.

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Why Medical Innovation is Key


Date: 28/01/2014

Why Medical Innovation is Key

In 2012 we set-up the charity Joining Jack to fund research to develop treatments and hopefully one day a cure for Duchenne Muscular Dystrophy. And for the first time in the history of this terrible disease, there is now real hope.

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Duchenne Policy Forum in Washington DC


Date: 16/12/2013

Duchenne Policy Forum in Washington DC

Leaving Washington on Friday night, I couldn’t help but feel proud of the message that parents and people living with DMD delivered to the FDA.

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L'Etape Part 1


Date: 17/07/2013

L'Etape Part 1

It's a while since my last blog and it seems an even longer time since Brad and Cath Wiggins came down to work and spurred me on to start planning our last challenge.

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Nearly a year on


Date: 22/09/2012

Nearly a year on

It's nearly one year since we walked into the clinic in Leyland with Jack and we received the news that he had Duchenne Muscular Dystrophy, DMD.

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Dubai friday brunch


Date: 07/07/2012

Dubai friday brunch

It seemed a long time ago that we had set off down the M6 with a suitcase full of rugby memorabilia and stickers to take the flight over to sunny Dubai.

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We have lift off


Date: 05/06/2012

We have lift off

On the last day of the holiday as the sun went down behind the mountain I wandered to the back of the beach to a small bar to just have a think as to what lay ahead when we landed back in the UK.

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The start of the journey


Date: 14/04/2012

The start of the journey

Hi Everyone, I have just put Jack to bed and lay at the side of him for half an hour wondering what to write. I would like to start by saying a big thank you...

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