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Janet Bailie - Northern Ireland

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I got involved with my first committee at school aged 15 and kept on going. Now I am on the council of the Royal College of GPs and the British Medical Association in Northern Ireland, where I live. I have been a GP for 21 years. I have been a mother for 13 years and have 3 children, two girls and one boy. 8 years ago I learnt that our son has DMD. I grieved and shut down, waiting for his decline, and changed my job to allow me the time needed to care for him. My husband Roy kept searching for an answer, and found Action Duchenne, who told us that there was a future to be grasped, the possibility of better treatment and even cure. Thanks to that advice Andrew started on steroids, with very positive results. He is now 11 and shortly to finish primary school, and is still walking.
Roy and I have lobbied local politicians and our health department for improvement of services with the help of Action Duchenne. I have been able to use my medical connections locally to raise awareness of problems with care, and now meet regularly with the local consultants, who are responsible for providing care. Our current task is to ensure that the appropriate services exist locally to meet the care recommendations of the TreatNMD guideline. Once local services are up to standard we can build in care according to the latest research. My gratitude to Action Duchenne is huge, and I am delighted to be able to be an advocate for them.

Janet Bloor - South East

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Our world fell apart, we were given no help and no idea of where to turn to. We found out about Professor Dubowitz and went to see him. We had the double whammy in that at first they said Phillip fell under the Beckers spectrum it was only a few years later during the Statement of Education process we saw amongst the paper work they now considered Phillip to come under the Duchenne Spectrum. They had failed to tell us.

Just when we thought things could not get any worse it just did.

We rapidly learnt that everything is a fight with a disabled child, the right school, wheelchairs and the biggest ongoing fight coming up to its 6th year - adaptations.

At the time Phillip was first diagnosed I had just decided to go back to university and do a law conversion degree and then the bar. I knew instinctively there would be a fight on and I needed all the tools necessary to fight for Phillip.

I taught myself Education law and used it to win a place for Phillip at Treloars, I have the Director of Surrey East Health admit on paper that Surrey Wheelchair Services is not fit for purpose and if charitable providers walked away from providing wheelchairs for kids their service would collapse.

Adaptations is a whole new problem but at last with the intervention of our local MP things are going my way.

That is just a snap shot of our life so far, recognizable I am sure by every family touched by Duchennes. What I can say about my approach? I am paid to argue by choice but it is in my nature to fight injustice wherever I see it and I have a tenacious streak that never gives up till I get my way.

I fully appreciate that is not in everyones nature but I hope to take up the fight for other families already on their knees with grief and may not have the strength or inclination for a fight.

Education is the key to more awareness about Duchennes, we are in exciting times we have moved form a position of no hope to one of possibilities and Action Duchenne has to be in a position to quickly implement any treatments.

John Burke - Wales

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Fleur Chandler - London

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My name is Fleur Chandler and I'm married to Paul, we live in Hampton, in the far south west of London with our daughter, Rowan (nearly 6) and our son Dominic (nearly 4). Dominic was diagnosed with Duchenne last year at Great Ormond Street, and our shared care protocol is under Richmond and Twickenham PCT. I have worked in the pharmaceutical industry for around twenty years. After a first degree in Psychology and Biology, I spent ten years working in clinical trials giving a strong background in clinical trial design, execution and analysis. Following an MSc in Health Economics ten years ago, I moved into the area of health economics ( a discipline which aims to demonstrate the true value of medicines and healthcare) within health outcomes research. I have a specific interest in, and knowledge of, access to medicines in the UK, with particular focus on national guidance and guidelines on drugs and diseases from bodies such as NICE and also a focus on local funding at a PCT level.

John Miller - Scotland

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Mark Silverman - London

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I became a trustee of Action Duchenne shortly after our son, Thomas, was diagnosed with Duchenne in 2007. My family and I have raised funds for Action Duchenne through a variety of events and thanks to people's tremendous generousity. However, lobbying for change in the way governments, primary care trusts, local education authorities and regulatory authorities respond to the complex requirements for people living with Duchenne is equally important. It's too easy for people to do nothing with the status quo but look around at what has been achieved in countries like Denmark and you'll see that the UK has a long way to go in providing the best for people who have Duchenne.

Carl Tilson - North West

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My name is Carl Tilson... Action Tilson known to by my peers, I live in Manchester in the North West. I was diagnosed at 5 years old with Duchenne a condition that has robbed me personally of the quality of life that many take for granted. Having been taken to hospital leaving college due to a decline in health four years ago I joined the charity Action Duchenne as a volunteer where I have gained a reputation being an entrepreneur in the field of campaigning. Being related to a Manchester City and England football player I have inherited the same determination and grit my grandfather Frederick Tilson had. I'm very passionate and dedicated to my cause raising the profile for Duchenne and giving young men living with the condition a voice. My hard work campaigning for Action Duchenne has not gone unnoticed where I have been named Mancunian of the Year earning a Pride of Manchester award. I have the experience and knowledge living with Duchenne where I know the urgent need to bring drug development to the forefront.