Kathy Wedell, mother to Isaac, is Action Duchenne's new Campaigns Officer

"On World Duchenne Awareness Day I’m delighted to announce that today I join the staff of Action Duchenne as the new Campaigns Officer.

Mum to Isaac, who is living with Duchenne muscular dystrophy, I’ve been an active campaigner with Action Duchenne since 2011.  Having found the support of the Duchenne community at the Action Duchenne conference in 2008, several months after Isaac was diagnosed, the annual conference helped my husband Stuart and me through the next couple of years as we reshaped our lives with the reality of Duchenne. 

Determined to fight the condition, in 2011 I went with Action Duchenne to Romania, Italy, and Latvia, as part of an international delegation to develop best practice in empowering families and people living with Duchenne.  Things took off from there:  I joined the charity’s board of trustees and became an active campaigner.  Many people will have seen the picture of me ‘speechless about Translarna’ (I had actually lost my voice). 

Translarna Vigil

Other work has included devising the ‘Joining the Dots’ campaign to realise Action Duchenne’s longstanding vision of a Duchenne specialist centre within two hours travelling distance of everyone in the UK, and working alongside colleagues in Action Duchenne and other charities on the Newcastle Plan to increase DMD clinical trial capacity in the UK. 

On this day we celebrate the hopes and dreams of everyone living with Duchenne muscular dystrophy – a wonderful day to be starting work at Action Duchenne and I look forward to working with colleagues across the community on many future successes!"

Everyone at Action Duchenne would like to offer a warm welcome to Kathy (even though she's never really been away) and are excited to get working with her.

If you have any questions about campaigns and policy, or would like to get involved please email [email protected]