UK Dupuytren's charity

[watervole]

Many of you will know someone with one or more bent fingers.  It's a condition that a lot of older people suffer from.  In most cases, the bent fingers are caused by a condition called Dupuytren's Contracture.

In most cases, probably the majority, people don't realise early on what they have, and in many cases don't seek treatment until the finger is really badly bent and they're unable to use it.  It develops slowly and I suspect many think it an inevitable condition of old age.

I've been asked if I'll help set up a charity to promote research and better knowledge of the most effective existing treatments.  The UK is still pretty much in the Dark Ages when it comes to Dupuytren's.  Both Germany and France are way ahead of us.  (Germany had radiotherapy 25 years ago and France has a big lead in breaking cords with the aid of needles rather than surgery - known as 'NA')

Does anyone have any experience of setting up a charity?  Are there problems/pitfalls I should look out for?

I don't want to get too heavily involved until the tennis elbow clears up, but I do believe that this is a medical condition that has better (and more cost-effective options) than are currently available in most of this country.

Comments

[alexmc.livejournal.com]

May I ask whether this is bent inwards or outwards?

[watervole.livejournal.com]

Bent inwards. See the picture here - http://www.dupuytren-online.info/ for a typical example. One of the diagnostic features is a cord running from the base of the finger down into the palm. You can see it in the photo, but it's easy to feel on the actual hand.

The earliest stage of all is small nodules on the hand that can easily be mistaken for calluses from carrying a suitcase - they appear in exactly that part of the hand.

[frandowdsofa.livejournal.com]

I found out a year or so ago that Bill Nighe has this.

Start by talking to your local Council for Voluntary Action, or Voluntary Service. There's one in every local authority. They exist to help people run voluntary groups or services, including charities, and can advise on things like constitutions, financial and legal arrangements, trustees etc. The directory of Councils is here: http://www.navca.org.uk/

If you just want to research, check out http://www.charity-commission.gov.uk/Start_up_a_charity/Set_up/Things_to_think_about.aspx

[watervole.livejournal.com]

Thanks. It's useful to know of celebrities who have the condition. I'll also go look up the local council.

[sigisgrim.livejournal.com]

There is a lot of good and useful information on the charity commission web-site. Essentially a charity can be one of three types of organisation:
* Membership society;
* Charitable company;
* Charitable trust.

All will be managed by a group of trustees, think company directors.

I was a trustee of an unincorporated membership society for over 12 years. You will probably not be wanting that type of charity; I would think a trust or company would be more appropriate.

There are sample constitutions on the charity commission web-site; I would start there. http://www.charity-commission.gov.uk

[happytune.livejournal.com]

I second this - charitable company or trust much the best option, not least with regard to Trustees' liability.

http://www.charity-commission.gov.uk/Start_up_a_charity/Do_I_need_to_register/Resources_for_very_small_charities.aspx

[fjm.livejournal.com]

The Science Fiction Foudnation is a charity, I wasn't around when it was set up, but Caroline Mullan was.

[vjezkova.livejournal.com]

I admire you! you always think of other people in need!

[grikmeer.livejournal.com]

This has suddenly made me paranoid. At rest my fingers bend about 30˚ at each joint; is that within the bounds of the condition?

I don't know much about applying to become a charity (other than some bitter grumblings from Richard Dawkins about how it's much easier if you're attached to a religion)

[watervole.livejournal.com]

That sounds normal. If you are unable to straighten them, then you should worry.