To all members!

[Sweet]

While our very nice team of committee members were having their AGM on Saturday a little group of us wandered into the pub (under protest obviously!) and talked amongst ourselves while waiting for them to catch up! It didn't start out as a discussion about the KC group or as anything really but a nice place to chat and get to know each other but we did raise a few things that i would like to put here. I did send this to Anne first to make sure it was ok to post but am looking for any opinions from everyone here on this!

This is by no means a bad post and if i say anything offending or which others wished i hadn't then i'm sorry. But i just thought that as this place is run for all of us it would be nice to say so here. Also this is only our opinions so no-one has to agree and i hope that those i have talked to will be ok about me posting it here!

I will have been here a year next month, time really does fly by, and i think that this place really is supportive and great for information and advice. It has been so good to meet other people in the same place and share experiences with them, and for that i am extremely grateful as it has gotten me through so many bad patches including seven months sick leave. I have learnt so much from others here about lenses and treatment including finding the details for my surgeon who did my graft! Thanks Jayuk

When i first joined here it was a little quiet! But as mentioned on Saturday now it is hard to get a look in!! LOL! Now we seem to be racing each other to welcome new members and post some support!! But this is truly lovely and i think that new members really do appreciate it!

It has also been noted that we do on occasions chat way too much about things totally unrelated to KC, but the Chit Chat forum has been a great success! Humour and being able to laugh with others is a major thing to us in dealing with stress and illness and i'm sure that we would all like to thank John for adding a place for us to do that, and it being taking off the main forum. Hehe if we didn't have a place to chat new members would think by our posts that we really are mad!! LOL!! Well i know i am but that's a completely different story!!

A frequently asked questions forum would be useful as well as we spend a lot of time welcoming new members and repeating the basics to them. While this isn't a bad thing it would be good for new members to be able to look up and read it themselves as they will undoubtedly come across questions they never thought to ask! Maybe it could be a closed section where we ask John to post a FAQ for us but people here can't reply to it. That way it would stop us chatting off topic, not that we do any of that!!

I would like to thank everyone here who has made it possible for this place to run so well and for all the good work it does. It really does make a huge difference and as we found out Saturday we are getting loads of new members every week! So we must be doing something right! Unless of course every search engine detours this way first!

In the AGM we were given details of the financial records etc so i am sure that this is ok to put here. As members though it would be good to know what the plans are for the group, where the committee sees it going and what they would like to spend the money on this year etc. This way as members we can look into raising funds and take some stress off the committee who have enough to do as it is. It was also mentioned about the payroll scheme where you can donate money straight from your pay packet! I hadn't heard of this before with this group although there were recent postings here suggesting the idea of credit card transactions online and direct debit payments. Maybe we need a link to this here?

I know that it is difficult as many members do not have internet access and so do not read here, but we have a very good newsletter which does a fantastic job of keeping us all up to date. Just maybe future ideas and plans should be written there so that we can all get together and do something!

It is always seen in a bad way to ask for money but in all honesty there are more than enough members here to help out. Booklets and information are not cheap to print but as members we are totally unaware of this and how much money it all costs. Same as with conferences etc, we have no idea of how much planning and funding this takes and while the committee are there to organise this it wouldn't be a bad thing to get us all involved! We all feel passionately for thie group and would want to help out anyway we can. And raising awareness and some funding would be far from a bad thing.

Also about our committee members i think that it would be lovely if we got more involved with you and got to know you better! Maybe a link here and in the newsletter as to who you are etc and where you live would be lovely! As you are holding this place together for us and making some major plans it would be great to know you. Being pro-active was something brought up Saturday because while we strongly think that the committee are we would like to know about it!

As members it would be great to know what was being planned so that if anyone asks why we want money from them and advertising we can say so! We are so strong here in posting about being pro-active in our care and getting the best treatment and encouraging new members to do the same that i think we should now follow this through and involve the KC group as a whole.

Also it would be nice if we could have a link to the minutes of the meeting or copies as with most charities and groups i have been with they usually do. While members are not allowed to listen in on committee meetings (and indeed why there are AGMs) they do need to know what is going on and what was decided. The opinons of all members should be taken into account and then it's up to the committee to think on it and decide on a plan.

There have been suggestions here about a calendar and car stickers as a way to get funding. John also brought some of the KC T shirts with him Saturday as well. And there were some lovely homemade cards from Elizabeth and the address cards about the group. All of this is a great way to get us noticed!

I tihnk that this place has grown so much and much more in the years before when i wasn't here! Anne i think that you should be so proud of yourself for what you have achieved! But now that we have almost 1000 members and our forums are never quiet and we even have a few optometrists who very kindly reply to us we should see this as being the great step forward that it is.

1000 opinions are always going to be better than 1!! If we have a good supporting atmosphere where as members we can talk sbout what we would like from this charity and how we feel this group is going the committee will then have some ideas to work with. So i will leave you to ponder and see what opinions you have or i could just be hung over from Saturday and got carried away!!

Sweet X x X

[jayuk]

Claire

I agree with alot of the things which you have said; however the visibility of the "backend" of this charity may not be advisable due to both commercial, political and even personal reasons (Yes, even though its a charity)

However, I think there does need to be a steer which effectively does talk about where this board is going and what "we" want to achieve.......not a strategy as such....but merely a plan of what can/may/will happen in due course....(ok ok that is a strategy!)

From a financial perspective; I agree......I would definately be willing to commit to some funds; albeit nominal; in the grand scheme, to the running of this place.....and I would like to think that many others would also!

In terms of this boards value; and lets not kid anyone, thats what we all need and want; it does serve its purpose 10-fold!....as you rightly pointed out........and I think its helped soo many people, both guest and registered users........and above all its helped me immensly.

Finally...I think alot of the limitations we have observed, stem from limited resource; both man power and possibly funds.......if we can address these then maybe we can move forward.....eg. John does a excellent job on this board to manage it!...yet we all put forward so many suggestions and he does get them done in time......and thats the key word here...TIME.....followed by Effort........

Hope that helps

J

[John Smith]

Thanks for that, Sweet. An excellent post.

I've already taken action on two of your points...

• The composition of the committee has been announced in the Announcements forum
• I've created an FAQ forum along the lines that you suggested

As a committee, we are only as good as the ideas we have. The danger of having long-term committee members is that it can become a little sluggish. We always welcome ideas from members, and from other groups (such as the DVDs produced by Keratoconus Australia).

So please post your comments on Sweet's post below. I'm sure that they'll make interesting reading, and many of them could be used to benefit the group.

[jayboi2005]

Growing and helping this charity to expand is something that members should be 100% involved in. Regardless if you are giving an opinion or raising £20k its all the same. Without members there would be no charity, I have been here since January and I already feel like I have known so many of you for years. If I was to meet most of you I doubt I would get that awkward first meeting silence because it is so welcoming here and people are so open to chit chat as well it really creates a great atmosphere on this board, which reflects the charity’s image in a very positive way.

I admit that John does a great job, as do all the other people on the committee. And being involved with two charities already on a regular basis I know there is so much work that most people wouldn’t even imagine exists. I know that all work done for this charity is unpaid and I know that is truly what makes this a great charity. I know this because the people are doing the work because they want to and not because they are paid to.

Education and research are something that I personally feel this charity should focus on. Education the general public has so many advantages; apart from raising awareness of KC it also may spring into donations. For the education to take place and be successful it needs most of us to get out there and do it. A spare hour here or a spare hour there, go along and talk to a local church about the charity. Stand in your local town with information leaflets and collection boxes. Im sure you get the idea. (Please make sure that the committee are aware of any fund raising, and check with your local council if you need a permit.)

I admit one thing that this charity does need is to appoint people to complete and see a task through. E.g the charity is going to run a series of raffles to raise some money. One person needs to be appointed to see that one project through. Then a regular flow of projects need to be completed this will help the committee a lot. I know also that getting people to commit to things like this can be hard. However this would be great on any CV so im told.

Im sure you all get my point, I could go on and on but I will stop here. Anyway I love this place and think it is great!

[Andrew MacLean]

One way in which raised awareness could be of direct help to KC patients would be in the potentially increased supply of corneas for transplant.

I understand that the eye is one option that more people exclude from their donor registration. Yet, when I had my graft and later found mys ight returning, many people told me that they had revised their donor registration to include parts of their eyes in the organs they were willing to donate.

I am not sure that I agree with the Scottish Executive's solution to this question. Their take on the question of donation is that there ought to be an opt-out, rather than the current opt-in system.

Anyway, thanks to Claire for a thought provoking anbd change-making post at the head of this string. Thanks also to Jayuk and Jayboi for their helpful posts, and of course John for his typically swift response to good suggestions.

Andrew

[Annmarie Miles]

Wonderful post Sweet

I work in fundraising for a national charity. I would be happy to help in any way I can.

I don't do direct fundraising - I run a team and work on some strategy and lots of processing. But a big part of my work is donor relationship building.

50% of our annual income is by standing order. 12,000 people giving a small regular amount. This Partnership (as we call it) is vital to our survival.

You say we have 1000 members. If half of those committed on average £5 per month - well you do the maths

If half of those got a friend to ....

Sorry I'm off - but do let me know if i can help.

And I am sorry if I subject ramble on certain posts - I will try to be a good girl.

Annmarie

[Anne Klepacz]

Thanks for this Annmarie. A lot of people already Gift Aid their donations which means we get a tax refund on anything they give which provides extra income for us (you can download a Gift Aid form from the main site). Another painless way of donating is through Payroll Giving - most employers run these schemes and smaller employers are being encouraged to join in. They actually get some money back for setting up a scheme to make it worth their while. Payroll Giving enables people to make a regular committment of a few pounds each month. And it has the advantage for the charity that there is some regular income coming in so makes it easier to plan for the future.
Keep the ideas coming folks! As Sweet and Jai said, the more voices there are speaking out about keratoconus, the easier all our lives will be with fewer unenlightened people telling us to put our glasses on!
Anne

[Sweet]

Anne could you please post the details about pay role giving as i am interested! Thanks!

Sweet X x X

[Tina Sweetland]

Anne

I'd also be interested in understanding how payroll giving works.....and what I'd need to do...

[Anne Klepacz]

My problem is that I have temporarily (I hope) 'lost' the leaflet I had about this in my piles of KC stuff! Anyone good at filing?!
But Payroll Giving is a way of giving to any charity of your choice by automatic deduction from your salary. And I'm pretty sure it's deducted before your taxable pay is worked out, so by giving in this way, you're slightly reducing the tax you pay. Most large employers will already be enrolled in the Payroll Giving Scheme, so all you need to do is to talk to the section that deals with your pay and ask them for a form which you fill in specifying the charity you want your regular donation to go to and how much you want to give each month. Once you've given in your form, your employer will contact us for our bank details so that the money can be paid direct to our account each month. Smaller employers may not be part of the scheme, but the incentives I mentioned are supposed to encourage them to make this available to their employees. I'll have a blitz on my paperwork and post more when I've located it.
Anne