Thursday, 26 May 2016
A year since the symposium
It is crazy to think that it was a year ago now that I was visiting Holland for the Dupuytren’s Symposium. The event was great and I did learn a lot and certainly met a lot of interesting researchers and doctors who really seem to care about the patients rather than the kind of doctors that will just fob you off. For example most were willing to listen to the argument for radiotherapy rather than just going against it because it is radiotherapy without listening the evidence for it. Back then I was very interested in the molecular level pathway research as this is the sort of thing that I used to look at back when I was doing my PhD.
Honestly though I can’t remember a huge amount of what I saw back then and even cannot remember some of the presentation that I gave! Therefore this week I am hoping to get the chance to look through some of the notes that I made. Last year I was going a session by session update on the blog and this really gained a lot of attention, I encourage anyone new to the conditions to go and look at the information on there and watch any particularly interesting videos as they are all available on YouTube (mine included).
The conference was a very interesting experience and something that I am hoping to do again, time and money permitting in the future. It would be great to come up with some collaborative project that we can all work towards for the next conference, we have so many great and intelligent members on the various Facebook groups that I am sure we could design and successfully implement a project that could make a big difference and at least as patients we can feel like we are contributing.
Next year my big aim is going to be to try and raise awareness and funds for the British Dupuytren’s Society through my (with my wife) 2191 challenge. My plan for this year is to work on that. I have a few essential things set up such as a dedicated blog and a donations page but I would like to get in touch with media outlets and see if I can get any of them interested in promoting the campaign to raise awareness. I have a few ideas as to places that I can try and there are the contacts from when I was previously interviewed by the BBC. Several people saw that interview so it would be great if I could get on to the TV again. There are of course running specific things I can do. There is a magazine that I read that has an article on someone who has gone from fat to fit and I think I count in that section. Any ideas on anything I can do would be appreciated.