In the lead up to Muscular Dystrophy UK’s Spirit of Christmas concert I was asked to write an article for the local paper, I have been pretty honest and open this year so I decided I’d follow that theme and write an honest Gloucester Citizen Article on Duchenne, it’s not my best writing, or favourite article, but is from the heart and has had a good response from people.
I have done another interview with the local newspaper, this time about the Muscular Dystrophy Campaign’s new Fast Forward campaign, you can read it here – New campaign offers lifeline for Gloucestershire children in need of muscle wasting treatment
I’m no expert on this subject but I think it’s an important one, it’s a fairly new idea which hopes to cut the red tape and drive innovation in the medical field. Medicine along with many other branches of science has been somewhat stagnating since the end of the last century, before that we had a great boom, the space race was a great example of man pushing things to there limits, but there were accidents and casualties along the way and these have made governments, companies and people scared, more and more regulations have been put in place to safeguard people. Early access to medicines doesn’t want to scrap all regulations and put people in danger, it wants to encourage innovation and help people who have no other chance, people will be informed of the risks and able to choose whether or not to try a drug that hasn’t been through every possible rigorous trial before being approved,this takes years, and some people just don’t have that time, we need to honour the people who have fought and taken risks by being more adventurous ourselves, don’t let fear kill thousands more, push for early access, put pressure on MP’s, make the big drug companies see it’s worth the risk and help the small companies get their possibly life saving drugs on the market.
The Gloucestershire Echo contacted me to ask my thoughts on the governments new early access to medicine scheme, the article was well written and crafted, it’s good to see reporters not using patronising or disabling wording as is often the case, well done to Michael and the Echo.
As you probably know I am trying to raise money for a new wheelchair, the NHS are still being stubborn so my neighbours have offered to set up a fundraising event, it has got much larger than I expected and they are doing an excellent job. I decided I’d tweet some of my followers from[…]