Since coming across this page http://dupuytrens.org/DupPDFs/dirlist.htm of the Dupuytren's Foundation I have spend a lot of time updating my Dupuytren's library. I now have over 1,400 articles and my personal Mendeley account is full. Fortunately they gave us a year free group account for the charity, and that contains 2 GB so far, and can go up to 100 GB so I can continue collecting for a while!

On a sad note: our chairperson Judith has decided to step down for personal reasons, so now we are down to 2 trustees. We have put feelers out to see if some of the people who helped us when we started the charity would be willing to step in, if not there will be a public appeal. For now we will wait a few weeks for any replies, but any volunteers who would like to be involved please contact us through the website or facebook.

NICE have to decided to go ahead with the appraisal of Xiapex, which means they are going to decide if it should be available on the NHS or not. So far they have not taken any of our comments or suggestions on board, but we'll keep trying. They don't expect to decide anything before 2015, so don't get excited folks! lol.

We have a beautiful picture on our website, courtesy of Megan Lindquist. Lovely cheerful waving hands. Dupuytren's patients are a good bunch.

That's it in a nutshell for our news, I will keep you all informed if anything else happens.

Oh and Wigan won the Challenge Cup! YEAH!!!

A good hangout

Today Anna and I had a good hang out which lasted an hour, shows that there is a lot to discuss for the BDS and that means that there is lots to do but that does mean time and with everyone working and in my case going on holiday in a week and having a wife who is expecting time is only available in limited quantities so we have to make sure we use it in the right way and on the right things. So in the coming week you will hopefully see another poll appear on the right on this page (please do both it is great to have some feedback) on some fairly big ideas that we would like to implement in about a years time should there be sufficient supports. 

We also discussed: 

• YouTube sign up and videos (seems to be dragging on but should be done in the next couple of days) 
• How to best use social media for optimal impact and awareness 
• Plans for BDS membership and benefits. 
• Improvements and additions to the website. 
• Trying to improve the ways that we communicate with the elderly demographic. 
• Business (charity) cards and their design
• Sites to sign up for free as a charity

That should be plenty to be getting on with for now.

Just spend a constructive hour talking to Gary.

Just spend a constructive hour talking to Gary. We discussed a lot of things, from contacting Pfizer to setting up an You Tube account for the BDS, ordering leaflets or business cards, setting up proper membership, the shop Gary set up.. and what we would do if the BDS had a very large bank account.

As a lottery win is not very likely we shall start small, one thing at the time,

I am sitting by the computer because New Zealand is beating Schotland at rugby, and it's a shame to watch. The Schots are trying but really they don't have much chance. Still, the result is not final till the game is over.

Imagine one of these sportsmen getting Dupuytren's  ( or Ledderhose, frozen shoulder..), that would be the end of their career. I cringe when I see how they get battered. But many jobs become a lot more difficult if your hands/ feet/ other joints don't move as they were supposed to.

Time to find a permanent cure, come on researchers!!

Anna