Monday, 21 October 2013

The Muscular Dystrophy Conference and Presidents Awards 2013

On the 12th October Michelle and I was invited to the Muscular Dystrophy Campaign’s National Conference and President’s Awards.

I don’t like rain… I don’t like rain, wind, snow or ice. All of the mentioned elements of weather are my enemy. In one way or another they hinder me and render me useless. I easily lose my balance and I’m not exactly steady on my feet at the best of times.
On the morning of the 12th October it was raining, relentlessly pouring down! We drove one hundred miles to the Muscular Dystrophy Campaign’s National Conference and awards despite the weather.
We arrived late due to a road traffic accident on the M1 and, slightly damp, sneaked in the back of the main conference hall and was immediately being given information via Dr Marita Pohlschmidt about the fantastic and on-going research into Muscular Dystrophy and related conditions. Fantastic and informative!

Up steps another speaker, Rebecca Day, Director of Development now tells us about money raised and where it has come from… 76 people remembered our charity in their will, 2,800 regular donors, 300 subscribers to the charity magazine – TargetMD, 14,000 cash donors, 700 people involved in 100 groups, 5,000 runners in many different events and all those skydivers for the ‘Make Today Count’ campaign. Then a picture appeared on the screen of me and my family! I wasn’t expecting this! Rebecca went on to talk about my ‘Mile for Muscles’ and I must say that I just looked at the picture with pride… all my family surrounded me and supported me. Amazing!

The next speaker was a lady called Debra McLellan – mother to four-year-old Dan who has Ullrich congenital muscular dystrophy, whilst Debra spoke and told about her son Dan and his condition I was constantly looking at the ceiling, flicking my eye lids to keep it all together and the pain in my throat was unbelievable. Debra had told us that the family had no celebrity or big company connections yet they have raised over £35k! I take my hat off for the funds raised and the bravery to stand in front of hundreds of people to tell them the family’s story.

Nic Bungay, Director of Campaigns, Care and Information was next up on the podium and he quickly went on to introduce us to Joanne and Jackie Ashton who spoke about Jo’s son Liam and his diagnosis of Duchenne Muscular Dystrophy, extremely moving and it had to be heard. Once again I must say that these two ladies were out of this world to do this in front of so many people and the speech was inspiring… Inspiring me to think of what more I could do to help! Something I think about during the coffee break.

After coffee we come back to hear from the Muscular Dystrophy Campaign Trailblazers, specifically, Tanvi Vyas and Mathy Selvakumaran. The Trailblazers speak about transport, education and all the parliamentary activity that goes on in this group of amazing people, fighting for the rights of ALL disabled people. Quite often you’ll see a Trailblazer in parliament, on the BBC or in the newspapers.

Now for Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign. Robert speaks about progress with Pharmaceutical companies and also pays tribute to Lord Attenborough and Lord Walton. Then Robert introduces us to the new ‘Making a difference’ film made by the Muscular Dystrophy Campaign, about two families.

Gary and Sarah Bennett share their story about 5yr old Abbi and again the devastation of Ullrich congenital muscular dystrophy. Once again despite living and dealing with this they have gone on to raised over £15k! Sarah told us on the film how at the end of the day Abbi will say “I don’t want this anymore” … I agree with Gary's closing statement on the film, it’s just not fair.

The second part of the film introduces us to John Dickson, diagnosed with Duchenne around his 1st Birthday. His parents, Paul and Angela, tell us the story of this bubbly young man who has a steely determination and an ambition to be a computer games designer. Angela says “Any parent… It breaks your heart to have to tell your child that you’ve got something and you can’t fix it because throughout life if your child has got a problem then you try to fix it but to not be able to fix something is really difficult…”
Now it’s at this stage that I look across our table and see Michelle in tears. I think the whole conference centre is stunned and rightly so.These families need help! These families are In our towns, These families are on our doorstep, these families are exactly the same as mine and yours!
It’s lunch time, this is an opportunity to meet and greet people that we have heard from in the morning session and also people we have not. We spend some time with Jo and Jackie Ashton, I wanted to tell them how moved and inspired I was by their strength to stand up there and talk like that, luckily we meet Liam too! We also spent some time with Mark and Harley Creswick who I had recently wrote an article with on respite care. Like John Dickson, Harley was diagnosed with Duchenne and Mark was telling me about Harley and what he likes… It’s at this point Harley tells me that he’s favourite thing is dinosaurs and he went on to tell me things I never knew about this diverse group of animals. Cheers Harley!

After lunch we head to a Limb Girdle workshop and hear from a nurse based in Newcastle that is working on the condition.Sara Wilcox (Muscular Dystrophy Campaign, Volunteer Fundraising Manager) is also in the room and mentions my ‘Mile for Muscles’ and Michelles support of myself and indeed anything I do is recognised by a presentation of flowers and applause, deservedly so too! We also meet and have since stayed in touch with Leanna Herbert, a fellow LGMD’er.

To close the conference we pay respect and honour Lord Richard ‘Dickie’ Attenborough (Honorary Life President of the charity), who in 1962 visited a hospital fete in Carshalton and met some boys with Duchenne and said ‘I wish to help’ and indeed he has ever since, Thank you Dickie! We also have a presentation from Sue Barker MBE who will present the ‘President’s Awards’.
Fundraiser of the Year -  Alex Johnson
Fundraising Group of the Year - Abbi campaign: 1 in a million
Corporate Supporter of the Year -  Matalan
Charity Champions - Martin Hywood
Mid Sussex Committee – Judy and Brian Hammans, Corinne Betts, Steve Hiles
Trailblazer of the Year - Luke Baily
Campaigner of the Year - Mark Creswick
Carer of the Year - Jackie Greenhalgh
Communicator of the Year - Rachel Kean
Scientist of the Year - Prof Francesco Muntoni on behalf of the MDEX Consortium
NHS Champion of the Year - Carolyn Young
Lifetime Achievement Award - Professor Victor Dubowitz
Patron’s Award: Outstanding Lifetime Achievement - Lord Richard Attenborough (Honorary Life President)

Myself and Sue Barker MBE

I was extremely humbled and grateful to receive an award. None of what I do would have been achieved without the help of all my family and friends.
It was a pleasure meeting and speaking to Sue Barker, she had a massive interest in football (like me!) and we spoke about sport in general and that was that! The Muscular Dystrophy Campaign’s conference and awards had come to an end.

We was leaving with a massive sense of gratitude to have what we have in our lives and also a brand new sense of awareness and the feeling of needing to do something, something else, something BIG! This I am working on very closely with the football club I support. As well as our beautiful daughter, Lucie, skydiving with the ‘Make Today Count’ team and my brother, Andrew, running the London marathon (Again!) We’ve pledged, as a family, to help others in every way we can and others should too!

As we go to leave the conference Claire Methven (the charity’s PR Manager) informs us that we should have been at a reception lunch with Sue Barker and we’d missed it. I apologised and told Claire how we’d got wrapped up talking to people and most importantly I’d learnt a lot more about Dinosaurs!

Outside in the car park? Still blooming raining! But somehow the day doesn’t seem so gloomy any more …

Martin Hywood, Living with and fighting Limb Girdle Muscular Dystrophy.