Race against time

June 17, 2005 ,

ONE of the features of the House of Commons is the hundreds of cross-party subject groups where members from across Parliament come together for a common cause.

Some of the groups are relatively trivial, but others are deadly serious.
I have had the privilege of chairing such a group for the last four years.
The All Party Muscular Dystrophy Group has campaigned to raise awareness and fund research into this terrible disease.

In particular we lobbied the government successfully for £1.6m to enable research into a genetic treatment for Duchenne muscular dystrophy.
This strain of the disease affects boys, who become wheelchair bound in their early teens, and are not expected to live past 21 years old.

This week we held a lobby day at Westminster when over 150 parents, with their children, from around the country came to press for more funds to carry the research on to the next stage.

The numbers were so great that there wasn’t enough space for everyone in the meeting room we’d booked.

The parents were led by Nick Catlin who came to see me with his wife and son Saul 4 years ago in Cardiff.
Nick and Janet are the sort of people who, when faced with the devastating diagnosis of their son, refuse to give up.

They set up their own charity and asked me to get involved.
It has been a huge privilege to work with the families, and the scientists to try to find a cure.

In my new role as a Whip I am no longer allowed to chair an All Party Group. But I intend to continue to help the families all I can.

Politics is not really about the ya-boo of the Chamber, but about Nick, Janet, Saul and all the other families who need change.