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Ann seems very Keen
Ann seems very Keen
As you may already know by Nick’s blog I was invited by Action Duchenne to take part in a delegation meeting on Monday 14th July following the debate in the Houses of Parliament that took part on 2nd July between Duchennne champion MP's, Nigel Evans and Dave Anderson with Health minister Dawn Primarolo.
Even though it was hard work getting up early in the morning I thought it would be worth making the effort so me, Esther, my mother & father made our way up to London by the Stockport train station and met with Bernard Mooney, Doron Rosenfeld and Nick Catlin in Westminster, to discuss what was going to be said in the meeting beforehand.
Anyway we then went to Richmond House where we was greeted by MP’s Dave Anderson and Nigel Evans, we all went into the meeting together – the parents, MP’s and Action Duchenne members where we was greeted by the Under Secretary for Health Ann Keen.
When I first met Ann Keen, I was astonished that she was indeed human, very down to earth and so understanding – I thought we would have had to get our hands dirty to at least achieve a hearing but no Ann was very supportive in our quest to save young peoples lives! I made speech about how this muscle wasting illness Duchenne Muscular Dystrophy affects my life and others living with this cruel cold-hearted disease. Also Esther made a lovely photo album showing some of the boys who have the condition and Parent Doron Rosenfeld from the Gavriel Meir trust presented their excellent video, including footage of Mark Styler talking about Duchenne. Bernard Mooney spoke about his son Ben who has Duchenne and showed a recent film of his son. Which all of this made everyone around the table shed a tear or two.
Ann Keen wanted to give us an answer on the same day but she decided to call a meeting that will be arranged in the near future with scientists, researchers and clinicians about what funds we need in place and how far we are in the field of treatment and what route to take to accelerate treatment from the lab to the clinic. I was dismayed by a comment made from the head of the Department of Health research funding team, Peter Sneddon as he recognized that we were exactly in agreement with their policy of funding translational research. Unfortunately he was stuck saying the old broken record of not agreeing to ring fenced funding but did concede that the DoH would look very favorably if our scientists put in bids to the MRC or DoH. Ann Keen asked for a review of the research and clearer guidance on what the DoH and MRC would fund.
Ann Keen was visibly moved by what happened at the meeting, she told me that she had already spoken with Lord Darcy about me and that they wanted to invite me to take part in Lord Darcy's NHS review.
As a whole I think the meeting was a success, not a complete success but another huge step forward to the future that is so bright!
Thank you everyone for the support…
2 Comments
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- Susan
- July 17th 2008
- 21:42pm
Thank you so much, Carl, for making the trip - it can't be easy for you and your parents to be trailing up and down to London. It is so very much appreciated that you are willing to speak out, and so generous of you when it's not just for yourself but for all the guys with DMD. You're raising the profile and definitely making a difference, MPs are beginning to 'sit up and listen'. Thanks again, Susan & the Ackroyd family x x
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Carl you are an inspiration to us all! I can't thank you enough for this huge effort, it does give us hope that at last someone is listening. We all really appreciate what you have acheived and the effort it took. Every respect to you! Mary, Steve and James x
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