An UPDATE on ACTION DUCHENNE - July 2008
Parent Project UK has wisely changed its name to ACTION DUCHENNE because the Irish Republic wanted to become part of the organisation and also because the older boys suffering from Duchenne Muscular Dystrophy asked to have a say in its management.
As usual, June was a busy month: that is when we bring Duchenne Muscular Dystrophy to the very visual notice of Parliament at Westminster by holding a Lobby Day, attended by more than 200 people, under the title of THE RACE AGAINST TIME. Many boys and severely disabled or paralysed young men in wheelchairs came with their families and we invited our individual MPs to meet us there. The letters which were sent beforehand to MPs nationwide made out a strong case for Government funding for specific research and clinical trials (which are now beginning in London). At my request, friends and family all over the country forwarded these letters to THEIR friends and family in other constituencies, and no doubt other ACTION DUCHENNE supporters did the same. (Scotland has its own branch of ACTION DUCHENNE and is lobbying its own Parliament). It is clear from MPs’ replies to their individual constituents that most of them are very sympathetic even though their replies come in a standard form – inevitably, when they receive a lot, for example from my wonderfully supportive friends in Epsom!
At our request MPs contact the Minister of Health; the replies, from Dawn Primarola or someone else in the Ministry, are invariably lukewarm. In the next two years the Government will give, she says: “substantial extra sums” for medical research so the money is there. Action Duchenne is asking for £30 million, which would be only 0.02 of this total budget for one year. The Minister refuses to ring-fence money for specific diseases, despite the fact that the Medical Research Council, to whom the Government delegates the responsibility for these decisions HAS ring-fenced a substantial sum for Motor Neuron Disease. Undeniably, there are many medical causes competing for funding, but it is worth remembering that the Duchenne Muscular Dystrophy front-line research may help towards finding cures for other genetically-based diseases, such as Cystic Fibrosis. It also makes much better economic sense to fund promising research and clinical trials NOW than to pay for extremely expensive care for sufferers for years to come. The NHS spends £20 million every three hours. Meanwhile, Government seems merely to shrug off the waste of millions of pounds on its own administrative inefficiencies.
Though we cannot as yet, it seems, have an effect on Government decisions, we MUST keep on making our urgent case. Some MPs are strongly and publicly supportive. Dave Anderson, one of our champion MPs summed up the debate: “I want to close by returning to the report that the Honourable Gentleman mentioned (Duchenne Research into the Clinic, Action Duchenne, June 2008). It says the system has failed; however, it is not the system but members in this house who have failed. If we go back to a lobby next June to meet the boys we met a fortnight ago and more of them are no longer there because they have died, we will have failed them again. We must put this right”.
In view of the inadequacy of pledged Government funding, Action Duchenne members do their utmost to raise money, as well as to make people aware of what the disease does to boys, young men and their families and friends. Most people know nothing about it until the long slow death is explained to them. Almost always, the people who do respond instantly and with understanding to the words Duchenne Muscular Dystrophy are those with hospital experience who have seen the boys’ terrible deterioration, or those who know about it only through friends or family. So we need to work hard and steadily at raising awareness.
The media sometimes have items on Duchenne Muscular Dystrophy research, particularly “breakthroughs” in other countries (with which ACTION DUCHENNE is closely in touch) and there is an international conference in London every autumn. Not long ago, there was an hour-long TV documentary focussing on the day-to-life of a young man with DMD. His courage was amazing, but the programme was harrowing.
I am very grateful for all the help and encouragement which EMC has given me ever since I started fund-raising. My Indoor Triathlon succeeded beyond my wildest hopes, raising about £3500 (not all from EMC!), the June Coffee Mornings regularly make about £600, and my particular thanks go also to Mary Fox who has arranged for me to talk to non-EMC groups about Duchenne Muscular Dystrophy and receive donations from them. Aluminium cans and foil bring in a small but steady income, as do used postage stamps. My greetings cards clientele is increasing; this is another useful way of publicising AD. I am very happy to supply cards of all varieties in quantity or to make one to reflect a specific interest. Just ask! I always also have leaflets to inform people about Duchenne Muscular Dystrophy and how we fighting for boys’ lives. And there’s a new way to help publicity and show support: a nicely designed sticker for your car, with the clever caption “MAKING MUSCLE WASTING HISTORY”. I would be happy to part with some of these; I have lots!
HUGE THANKS, Chris Watts
