Any ideas for fundraising for my granddaughter's operation

Crossed posts with the OP.

That would be a bit hard on the granddaughter!

This kind of thing needs a lot of information from various sources before it should be undertaken. I'm sure Maggiejane and her family have all that under control, but I think the information should be supplied to the public. Perhaps they need to make a fuller case?

Thank you for all your great suggestions and hints, they are really useful and we are looking in to them all. No jinglebells the operation has not been refused funding because of medical reasons. It is being carried out at Great Ormond Street and GD has been recommended by her NHS paediatrician as an ideal candidate. The operation is carried out routinely in America and in every case there is some improvement. Even if GD only gains a few steps this would mean she could get herself onto the toilet independently. Imagine being bright and mentally capable and not being able to go to the loo by yourself! We have seen amazing results on other children though and are very hopeful that she will be able to do more than this. There is work being done to lobby MPs to reinstate the funding for this operation but nothing has been done yet, I suppose MPs have a lot to think about at the moment! I think you will find that our NHS is gradually being eroded though, for whatever reason. A special thank you to the lovely people who made donations. We have been totally amazed by the kindness of strangers over the last few days. There are a lot of lovely people out there

By the way, Harrigran and I have made our peace so you don't need to be nasty to her anymore!

Yes Nellie I agree.
With a limited pot of money, the NHS mainly, though not exclusively, funds evidence-based medicine.
It is not all about cost-cutting - more about getting the best value for the greatest number of people. It's easy to point the finger at NICE but they have a very difficult job to do.
Of course drug companies fund research that is based on new drug therapy, and that leads to problems in itself, but funding for research into surgical techniques or methods of management, where drugs are not involved, is very limited.
Even if the surgery is not successful for Maggies DGD (and I do hope it is) perhaps some knowledge will be gained that could benefit other children in the future.

I read a bit about this surgery when I saw the post. The grandson of someone in choir had had this surgery in the USA.

The link Jalima has posted has quite a lot of information about where and when this treatment can best be used. It seems to be an excellent source of information.

There are a lot of contra-indications for this treatment depending on the individuals disabilities. It is not a cure all. I think at present the trials of the surgery are ongoing and still being evaluated.

I think the reason the NHS don't fund this routinely is that the outcome is not always positive.
The reason I donated was that I know that in Maggiejane's position I would just want to do everything in my power to help my DGD fulfil her wish.

I presume you are aware of this link maggie

I would keep pressing for your little DGD, things do look a bit more hopeful if the trials go well

www.scope.org.uk/support/families/therapies/sdr

If there was a house within the family, maybe a loan could be raised against it. You would not have to sell the whole home to raise fifty thou! So harrigran could have a good point.

This might help www.better-fundraising-ideas.com/

So sorry to hear about your niece suzied and well done for your fundraising efforts.

Imogen's operation was carried out in Bristol as part of a trial - have you asked your consultant if there are any trials in your area? Any money raised could then go towards physiotherapy (apparently not covered afterwards).

.. the term ever ...

annsixty- have never heard the term again- so does s/he mean 'remainer' here? Quite sick to use such a thread for this, if it is, truly. How insensitive!

Back to the OP!

Marmark sounds a bit up him/herself as s/he is criticising others of being. Unpleasant and unnecessary comment.
Back to fundraising - my family have raised a lot of money for a particular charity in memory of my niece who died aged 16. money raising events which have been good - last weekend a Wimbledon strawberries / cream garden party with Pimms cakes/ plant and craft stall / huge raffle organised by one of her friends mums - lots of hard work getting it together and all the donations, but it raised over £2000 and they managed to get matched funding so that was £4000. Perhaps you could try social media Facebook/ Twitter etc, get a few people to retweet your appeal - well known people who have lots of followers, Steph and Dom from Gogglebox are big on Twitter and if they retweet your appeal lots of people will read it ( that's just one example)

Not all who you term inners are wealthy or unkind marmark1
Although I agree with your second paragraph.

The news media can be brilliant at highlighting this kind of story, as in the local press in my link, see my post above, and also the national press.
Have you lobbied your MP too maggie?

Sometimes consultants will join forces to lobby NICE too and shame them into changing their decision. If this operation is being carried out in Wales it must be feasible and worthwhile, especially if the consultant at Great Ormond Street is willing to carry it out albeit privately. I expect he/she is frustrated too at the lack of funding.

these not Hesse

I'm thinking now of the little boy who needed Proton Beam therapy. The parents raised the money for that. He has benefitted hugely from the treatment he had in the clinic in Prague. I would think this is a similar case. Sad if it is. And sad that the NHS has to make Hesse restrictions.

Sorry for referring to inners and outters again.But these up themselves people sooo sooo annoy me.
I don't envy them,and wish them all the luck in the world,enjoy what you have,but a lot of us don't have.
Don't get me wrong folks,I'm very happy,if I had money I would probably give it to my son anyway.BUT the but again,don't get me started.
Anyway,good luck to the OP, it's a disgrace you have to beg for the operation in the first place,in light of where some of our money's spent.But good luck all the same.

jingl has touched on a very important point though. Did the NHS refuse to operate for medical reasons?

Marmark is not the only one to refer to a poster who was perhaps less than kind so read the posts carefully GJ and don't ask questions you can easily answer for yourself.

Marmark- which poster are you talking about here,

And what is an inner??? Please!

Talk about out of touch,is this person for real? I bet she's a inner.

Having read the Daily Mail article.and seeing how moved everyone was. Why not try the Mail again for a follow up story and fund raiser? I visit a little boy of nearly 3 through Homestart who has similar difficulties. It must be so frustrating not to walk when others can so easily.

MaggieJane , just a thought but some large companies provide a charity matching donation scheme if any of their staff raise money for a charitable cause like yours.

So if you raised $1000 they would double it. There's a ceiling obviously and the person raising the money needs to work for the company but its a good way of improving the amount you can raise.

I know this because I've worked for 2 companies that did this and my SiL works for one now and they not only match fund raising efforts that he does but also take on community projects . So he was able to get the nurses rest room refurbished at the hospital where his wife gave birth as a thank you.

Might be worth asking friends and family to check if they work for an organisation that does something similar?

I would have said that not many families never mind not every family. It was a thoughtless and tactless remark.