So my PA booked two weeks off, usually this would be a big problem for me as I’d miss out on getting up and going out, in the summer it’s even worse as not being able to get out in the sunshine sends me into very low moods. This time was different though, I’ve managed[…]
Day 1 of my 7 day stay, transport arrived on time and didn’t have any idea what their office was talking about when they said they’d arrive sometime between 1 and 3 for my 3 o’clock appointment.
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.
Muscular Dystrophy UK have launched their Spirit of Christmas 2015 campaign, a carol concert will be held at Gloucester Cathedral on the 2nd of December
Well Sunday was the big day, I’d bought tickets, printed routes, worked out a schedule and even made an ID badge for my PA, all of this preparation wasn’t for an invasion or coup (although that’s a good idea), it was for comiccon!
After my recent media attention trying to help push early access to medicines the Muscular Dystrophy Campaign invited me to the APPG for Muscular Dystrophy at the Houses of Parliament, early access would be discussed along with other important topics relating to Muscular Dystrophy.
I had decided a while ago I should really try travelling on the train again, things must have improved since I was last on one in my late teens, driving is also becoming difficult for Mum, so I picked a nice day and decided to go to Bristol Zoo as it isn’t too far and I’d never been before.
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 local society of model engineers holds open days once a month during the summer, despite the fact it’s less than a five minute walk from my flat I had never been until today
Well while I was in London last week I lost my iPhone (more about London in a future post), this was, in a way, a slight blessing in disguise, it caused me to ring my brokerage firm to check if I could claim on my personal assistant insurance, which as it turns out I didn’t have! I had filled in all the forms and sent them to the brokerage firm over a year ago, all I can guess is that it’s either my fault for not sending the insurance form directly to Fish or Compass messed up and
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.