KC Charity moving on.....NEW NEWS AS WELL!!!

[ink4-u]

Hello Jay again
well, thanks to all of you who did offer help to the charity im starting over my eye condition. This charity is moving so fast with all new help ideas and possibilities. The help from this forum has been great we have lots of bases covered and im glad to be a part in this. We even have a board member from Ireland! Which i think is great word has got out there, I have been in touch with the charity commission and its moving and getting sorted, we need to prove ourselves as a charity before we can be given charity status. So what we have been granted is permission to raise money. One of the terms of charity status is raising £1000 before we are granted status.

So im here to see if anyone has any ideas on what we could do to raise £1000! As soon as we have done that we will have the charity number and nothing can stop us! Anyway thanks to all of you and i will keep you posted. Jay

[Admiral Collections]

Hi Jay

How about doing a tandem skydive. A really good way of raising money as most people have great admiration for someone who has chucked themselves out of a plane.


Nic :wink:

[clairemackaness]

I think thats a great idea, they usually raise about £500 - £1000 a pop

[creacom]

Yeah that sounds like a great idea. Even better if you can get a few people to do it.......I however will not be volunteering !!

Jacqui

[DuaneJackson]

Have you had anyone volunteer PR services? A piece in your local rag asking for donations may get you atleast halfway there.

d

[ink4-u]

well i have just had a great big shock. A donation of £1000! WOW

[easyasit]

Can i just say well done to Jay for getting the charities first donation of £1000.
He (We) now have an established charity!

Al

[clairemackaness]

Well done Jay

[ewan]

Congratulations, hopefully a good future is ahead.

Need any free website design for the cause, I'm the one to ask.

[ink4-u]

still keep your ideas coming, i might have gained charity status. but still need to raise cash! thanks everyone!!!

[Coding Monkey]

Hey, Jay! I think I've found a cure for you. My business partner is a qualified doctor, and they actually take care of your disorder at her hospital in Devon, on the NHS! Isn't that great? Guess you don't need any money after all!

[ink4-u]

Hey, Jay! I think I've found a cure for you. My business partner is a qualified doctor, and they actually take care of your disorder at her hospital in Devon, on the NHS! Isn't that great? Guess you don't need any money after all!

well that sounds great doesnt it everyone, thanks for looking into it for me. seems me days and days of research have been no use to me. even the head eye specialist for Cheshire musnt know about this because he must have forgotten to mention it to me, please tell me about this cure im getting excited now!
Cheers and thanks for looking into it for me.

[Coding Monkey]

I guess you best get in touch then. I'll find the number for you. Glad to be of help.

By definition of law, you also don't need £1000 to be a registered charity. Glorious day. Saves you the hassle.

[creacom]

Hi Jay

There is a professor in London who is supposed to be excellent in this field - Professor Reinstein at the London Vison Clinic. You can ask to be referred to him and if they say no you can take it up with your local NHS board.

Also, there is a forum and charity already set up for your condition and it could be worth getting in touch with them to see if you can do joint fundraising.

http://www.keratoconus-group.org.uk

Hope it helps

Jacqui

[ink4-u]

Hi Jay

There is a professor in London who is supposed to be excellent in this field - Professor Reinstein at the London Vison Clinic. You can ask to be referred to him and if they say no you can take it up with your local NHS board.

Also, there is a forum and charity already set up for your condition and it could be worth getting in touch with them to see if you can do joint fundraising.

http://www.keratoconus-group.org.uk

Hope it helps

Jacqui

thanks im doing all that. i am in touch with the vision clinic but their costs are too high.

[clairemackaness]

What are you trying to say Mac? PM me if youre not happy posting

[easyasit]

Hi All

I think some of you have the wrong end of the stick on this charity.

As i am working with Jay quite closely on this i do feel perhaps i should clarify a few things.

firstly i would like to point out the Jay as you all know is effected by this terrible conditon, and is aware that he does need an operation to have it fixed.
It is also noteworthy that Jay aims to finance this from his own resources. Not that of the charity.
Keratoconus is a condition that effects some 6000 people in the uk, not many you might think, but it is still 6000 people too many ho are infected with this terrible and frightening condtion.
The fact is little is known about it, or its causes. Jay has also spoken to a number of spcialists in the field on this.

This is the purpose of the charity and now more

to educate people about the condition
And to fund research.

At the moment we have neither the authority, nor the resources to be funding anybodies treatment. At this time we have no plans to either.

If anyone wishes to pm me personally on this please feel free to do so.

I thank you for your understanding.

Al

[clairemackaness]

I would like to support Jay here too. I think we are all able to read what Mac is trying to imply by this, but Jay has already told us all that any money raised by this charity is to educate and assist others and at no point with the money he needs for his operation be taken from funds.

Jay will be getting that money himself and through the help of his friends and family.

Much as I love you Mac, I think you owe Jay an apology for insinuating what you have.

Before you know it you will be implying that the donations I am currently receiving for HEAL Cancer Charity are for my own gain.

[creacom]

I think that there is a lot of people getting hold of the wrong end of the stick here.

I think that Mac is pointing out that there are NHS specialists in this disease. I too looked into it and I have told Jay everything I found out. I did this because Jay said in a previous thread that if anyone had any info to get in touch.

Ive just read through the posts again and I dont see where anyone talks about or suggests using money to their own advantage. Is it here or somewhere else ?

Jacqui

[clairemackaness]

Thats what I thought too Jacqui, but you need to read between the lines. There has also been some unscrupulous PM's going on behind the scenes that are also implying Jay is diddling us all. Thats all I'm saying! LOL

[Rob Holmes]

<<OK reality check>>

Please keep this on topic.

If anyone has a problem please PM a Moderator or Admin.

Thanks

Rob

[clairemackaness]

Well done for getting your donation Jay. Have you contacted Macs doctor?

[creospace]

Al did you not read what a modd posted, drop it and move on. I don't knwo what hapened lets let bygones be bygones.

Yoru hardwork is a credit to you, don't let your passion drive anger.

Gary

[clairemackaness]

Als post must have been deleted, I dont know what your on about gary! LOL

Anyway.....moving swiftly on. So Jay Well done for getting your donation. Have you contacted Macs doctor?

[ink4-u]

i asked for the telephone number of macs doctor the conversation didnt go well. but lets move on LOOK FORWARD

[ink4-u]

Just to note to everyone there has been some problems between me and MacMyDay! But in life we all get faced with problems. I also know that MacMyDay has ad problems with some other forum members. I think that we should now forget about it. Move on and look to the future. Thanks for the support of you all and extra thanks to some people you know who you are.

Anyway keeping of topic i will keep you all updates on this charity, which i have to add will be regulated my The Charity Commission on England and Wales. After my conversation with the charity commission i was assured that we need to prove ourselves as a charity first of all. And we needed to do this by raising around £1000 for the charities bank account. This isn't a LAW but its a requirement.

Thanks creacom for your info on the London vision clinic i have been in contact with them for around 6 days now and they have provided me with lots of useful information which helps. However at the Vision clinic this surgery they offer has been carried out on 10 people (CORRECT OF 16/01/06) so i have to watch and decide carefully. They do charge a lot of money for this treatment so i have decided to travel to Dresden in Germany funded personally. The long term causes of this treatment are unknown so i am wary, i am going to conferences about KC in London, Manchester and Birmingham and am aware of treatments that are available on the NHS and Private.

Thanks for all your support and help!
Cheers
Jay

[Admiral Collections]

I truly hope the charity thing kicks off for you Jay. Lots of charities have been established by sufferers who genuinely wish to help other people.

There are plenty of ways in which you can raise money by getting out there and putting yourself on the line, showing others that you are dedicated to your cause either by cycling, marathons, sky diving etc the list is endless. You could also get in contact with your local paper either by their letters page (if they have one) or by their press office. I firmly believe in charity work and I think that 98% of British people do and actively support their given charities because of personal issues, experiences etc. I htink it is brilliant you are highlighting a cause that has yet ot be made known.

I am dismayed however, that this thread as others, has yet again been hijacked by *****iness. However, I have to give the benefit of the doubt that this forum, as with msn messages and texts does a poor job of reflecting a persons tone when they are posting, as I have discovered myself. I now refrain from posting on a regular basis because it just isnt worth being straight talking and having a sense of humour.


Good luck Jay. If you need any more help, ideas re: fundraising PM. I will gladly help you.

Take care

Nic :wink:

[ink4-u]

thanks NIC :-)