I'm happy to reply - perhaps it might encourage some of our 'forum only' members to join as full members of the Group.
The charity was set up back in the early 90s (before the internet existed!) with an aim of providing information and support to those with KC, their families and health professionals.
As most people will know, it's run by its trustees who are all volunteers. So we have no staff costs and no office costs. However, this also means that almost everyone involved in running the charity has a full time 'day' job (I did manage to give up my day job a couple of years ago).
Our income comes almost entirely from donations from members, although we have been fortunate to get some grants from Awards for All (part of the Big Lottery).
Our biggest item of expenditure is the KC Group conference we organise every 2 years - our 5th conference was in Glasgow this year. Conferences are 1 day events to which we invite a variety of guest speakers - ophthalmologists, optometrists, representatives of other charities, and members talking about their own experiences. The budget for each conference is in the region of £8000 (it varies a bit from year to year). A large part of that budget is for recording the event and then producing a booklet and/or a DVD of the whole day. That way not only the 100 or so members who attend on the day get to know what went on - we distribute the DVD/booklet to all our mailing list membership. Through the conferences, we've been able to keep our members informed about the latest developments in KC treatment and research, address issues such as the effect of KC on work and study and what help is available, and share members' experiences of how KC has affected them and how they have coped with the challenges.
Our next biggest item of expenditure each year is the newsletter - there are usually 2 or 3 each year. As our membership has grown (our postal mailing list is currently close to 1700 people) printing and distribution costs for the newsletter have increased. Each mailing currently costs us around £1200. In recent years we've talked about whether to move to e-mail distribution to reduce costs. But when we surveyed our members on this a few years ago, very few people replied, and of those that did, the majority wanted the newsletter by post. And we're aware that not all our members have internet access or a computer at home. Like the conferences, newsletters update our members on various treatment options and include members' stories.
Other expenditure is on booklets and leaflets - we print and distribute the basic information booklet on KC (currently being revised so a new print will be needed). The booklet is sent to each new member of the Group and a number of hospitals and High Street optometrists order copies from us for their patients. There are also the various leaflets on KC at work and at school/uni. Although these are downloadable from the home page of this website, we also have hard copies which we send out.
There is some expenditure on regional groups - sometimes for a venue, although most have managed to get free meeting rooms, also on sending out notices of meeting dates.
A small part of our expenditure is on travel expenses for trustees travelling to committee meetings.
That covers the majority of our expenditure - as Andrew has said, full accounts are presented by our treasurer each year at the AGM. All are welcome to attend (March each year) and to request copies of the accounts if they cannot attend in person.
The website and forum, thanks to the generosity and dedication of our webmaster, costs the charity nothing.
There have been other activities over the past few years which have cost nothing apart from the time and committment of trustees and members. So the Group and individual members have contributed to NICE consultations on Intacs and Collagen Crosslinking. The Group has joined an umbrella organisation of eye charities and eye health professionals called Vision2020uk. That has enabled us to attend occasional meetings, raise the profile of the KC Group and talk to other eye charities to try to learn from their experience.
This probably isn't an exhaustive list of what we've done over the past 5 years, but most people are probably asleep by now, so I'll stop!
There are no doubt other activities the Group could undertake (though we might need more hours in the day!) Campaigning is an area we haven't really got into. Some of you will have seen a recent post from Gareth about the new Irregular Cornea Foundation
http://www.ic-f.org which I think aims to do more in that area.
But we're always happy to hear from our members with suggestions of what you'd find interesting or helpful.