Every little helps

April 01, 2004 ,

WHEN Nick and Janet Catlin came to see me at my constituency surgery two years ago, with their toddler Saul, I had no idea what Duchenne Muscular Dystrophy was.

Saul looked like any other toddler, but Nick and Janet explained that he had DMD, and would be wheelchair-bound before he became a teenager, and would probably not survive into his 20s.

Nick and Janet set up a charity Parent Project UK, to help parents to campaign for more money for research into this terrible disease.

I told them that I would join the Parliamentary Muscular Dystrophy Group, but then discovered, to my surprise, that it didn’t exist.

So I set up a new group.
We helped to get charities, scientists, families and politicians together to see if something could be done.

This week we’ve had some good news.
The Government announced a grant of £1.6m of new funding for research into a treatment for Duchenne Muscular Dystrophy.

John Reid the Health Secretary congratulated everyone for an “outstanding collaborative effort”.
We had asked for £2.5m, but we got nearly half the money that was available for gene therapy trials.

It should mean that the first ever human trials of gene therapy for DMD in the UK will be available within a few years.

Of course the clock is ticking for Nick, Janet and Saul who now live in London.
But also for Liza, Gareth and their little boy Ioan who bought Nick’s home in Canton.
It is ticking for the 1800 boys across the UK who have DMD.

The money announced this week is a big step forward.
But there is a long way to go before a cure is found.

Nevertheless, I confess a brief moment of pleasure that just occasionally in politics you can help to make a real difference.