Tuesday, 21 October 2014

The Muscular Dystrophy Campaign's conference and the next episode.

On Saturday, 18th October I attended the Muscular Dystrophy Campaign’s annual conference.

A chance to hear all the latest news, hear fantastic stories of inspiration, take part in work shops and generally catch up with friends within the muscular dystrophy community.

It started in earnest with the chief executive, Robert Meadowcroft speaking about the strides which have been taken in just 12 months. Robert went on to pay a great tribute to the late and great Lord ‘Dickie’ Attenborough. Lord Attenborough had been the president of the campaign since 1962 and it was in early 2013 that he left an impression on me. HERE you can see why.

Lord Attenborough tells a story of opening a hospital fete and noticed a group of boys in wheelchairs and went on to discover who these boys were and why they were there. The reason was Duchenne. He went home, saw his lad playing football and realised that he had to help and that’s what he did. He rang the secretary of the muscular dystrophy group and asked “Will you let me help?” and he did, in droves and relentlessly too. That is part of the reason I’m always so enthusiastic to help.

We then heard from Gary Bennett, a volunteer fundraiser, raising awareness and funds for his daughter’s condition and what an inspirational speech it was too and all the while raising in excess of £32,000.

After a quick coffee break, the next speaker was Marita Phlschmidt. Marita spoke about exon skipping and progress with clinical trials of which there are plenty. I must say that I’ve heard Marita speak many times and every time I’m extremely impressed with how she communicates such a complicated thing, with so much science involved to an audience of regular people. Some may not have any experience of these conditions until recently, genetics or scientific and pharmaceutical language, yet she always gets the message across perfectly.

I then went to lunch with Hayley, a friend whose son has limb girdle muscular dystrophy and Peter, another friend whose brother has Duchenne. Hayley recently skydived and raised the charity profile as well as thousands of pounds and Peter runs marathons, lots and lots of marathons! So the conversation at lunch was very inspirational and uplifting.

The first session in the afternoon was a workshop for me. I chose to get out of my comfort zone and visit a physiotherapy workshop. If truth be told I have never got on with physiotherapist, they anger me with lack of knowledge of my condition and their expectations of me. This was the first time it felt different. This was the first time it felt good. I came away from that session wanting a therma band and looking for a Tai Chi class in my local area. Whoever arranged that session or thought it was a good idea was right.

The final part of the day was a round up by Chairman Bill Ronald and the president’s awards presented by Sue barker MBE. This was another very inspirational part of the day. Hearing stories of commitment to the charity above and beyond the call of duty.  Those willing to help others with no questions asked. One award winner was Hayley too! Needless to say that myself and Peter clapped until our hands were sore.

So that was the National conference over. Another great year and like most events I attend that have been arranged by the charity, I left with a great sense of happiness and hope.

I cannot finish this here though. I honestly think that people should ask that question more in life. Richard Attenborough really did start something with me after I heard those words… “Will you let me help?”

As I mentioned above, I have many friends within the muscular dystrophy community and it is absolutely fantastic, I am extremely grateful! Most friends I have met due to the condition however, recently, I was put back in touch with a friend and ex-colleague; Marie.

Marie told me that her son had been diagnosed with duchenne. I cannot imagine how she felt and immediately tried to think how we could help. I asked one question on social media about an event next year and was inundated with replies. The amount of people that are willing to help me to try to help others was unbelievable.

I was supposed to be retiring from fund raising, I’ve had an amazing year this year I had got as high as I could get with my ‘Miles for muscles ‘and the feeling of achievement is second to none. I wondered if it was just me that felt that way so I asked my friend Jo, what charity work and fund raising events meant to her, she said “Always feel proud at what I’ve done and get emotional when I think about  why I did it and what it means. I feel privileged that I am physically able to do these challenges, even though sometimes I doubt myself and get nervous in case I let people down. But you can’t beat that amazing feeling and buzz getting to that finish line knowing you’ve raised vital funds for great causes. I always use these thoughts to get through the pain and keep going. Also, getting words of encouragement from people before, during and after the event really helps. I’m always on a high after and that’s when I start to think about my next challenge” Just brilliant.

So to show Marie, her family and many families like hers that we are here and we care, we will be organising the biggest fund raising event that we have ever taken on. I say we because it will involve lots of organisation and also lots of participants. I already have the full support of my wife Michelle, who has also volunteered to be involved in many ways as well as many friends who have also already committed… “Count me in!”

We have come on leaps and bounds with ongoing research since Lord Attenborough made his pledge in 1962 and as I have said we have so much more hope nowadays but please ask someone that question today… “Will you let me help?” and watch their smile grow and some of their worries will be lifted.

Over 26 miles, over 30 participants, raising huge awareness and vitall funds for world class research. A marathon of miles for muscles – An orange relay never been seen before. 2015, watch this space!

Feel free to follow me @HywoodMartin and the muscular dystrophy campaign @targetMD on twitter.

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