watervole | British Dupuytren Society

I'm currently working with a couple of other people who have Dupuytren's to start a new charity in the UK. The aim is to increase knowledge of the condition so that more people can be detected in the early stages of the disease. Also, to increase knowledge of the different forms of treatment that exist so that patients know what their best options are. (being able to sponsor more research would be great in the long term, but at the moment, the existing research isn't widely known so publicising that is top of our agenda)

At present, the standard response from doctors is 'Come back when your finger is too bent for you to be able to use it, and then you can have surgery.'

Surgery can be the best option in some cases, but if Dupuytren's is diagnosed early, then radiotherapy will, in many cases, prevent the disease from progressing at all. There are also other treatments that have pros and cons compared with surgery.

There's three of us working on the charity at present and we're in touch with some of the medical professionals who treat Dupuytren's.

What we're looking for is people who are willing to volunteer their skills to help with web page design (must be both easy to use and look attractive) and also to help with designing printed leaflets.

Also, as our current finances are precisely zero (we're just in the process of getting a bank account and charity number and all that process), we'd love help from anyone with fund-raising skills - or indeed anyone wanting to make a donation!

Anyone want to help?

Crossposted to http://dupuytrens-uk.livejournal.com/

Flat | Top-Level Comments Only

I hope you'll succeed with what sounds like an important new charity. Would you like me to pass on a link to this entry of yours?

yes, please.

Hello, I am sorry that I am unable to help with web design/fund raising skills; I do not have those skills. I did wonder if trying to contact well-known people with dupuytrens would help with publicity and fund raising. I have just been diagnosed with dupuytrens and have been looking for a support group. I have read the NICE guidelines on radiation therapy. Do you know anything about enzyme therapy? (collagenase therapy)Sharon

We've got a list of Dupuytren's celebreties and hope to contact some of them when we're ready to do a public launch.

We expect to add a forum/ support group to the website when it's up and running.

I think you'll find this page on collagense interesting - http://www.dupuytren-online.info/dupuytren_collagenase.html

I just wondered what is happening with the charity? How are things progressing?

sorry for the slow reply. Tennis elbow...

The charity is slowly getting there. We've got a bank account now. Next step is to get an official charity number. Then we need resources to work on the web page http://www.dupuytrens-society.org.uk/

I suspect it looks very slow from the outside, but we're wading through a lot of stuff and learning a lot as we do so.

British Dupuytren Society

no subject

no subject

Hello Judith

Re: Hello Judith

fund raising and web design

Re: fund raising and web design