Hi guys, on to waffle some more.
This is something I’ve been thinking about for a while, but GPN has no charity of it’s own, there’s TNA who’s remit covers various types of cranial pain, but although the best online resource ( in my opinion) for information on TN and various other forms of pain, there is no information available on there with regards Eagle’s Syndrome or GPN, and although I brought this to their attention a couple of months ago, they certainly hadn’t updated their site to include information on either condition the last I looked.
Setting up a charity is so so complicated it’s not been a task I’ve been able to undertake, it requires so much by means of legislation, accounting reports etc that it’s always overwhelmed me every time I’ve looked into it further.
What do you think folks is this something that we should look at putting into place or at least investigate further? It so difficult finding information on this condition, and so much of what we learn comes from trawling through heavy medical texts and trying to translate them, and picking up bits here and there.
What I would like to see is something in place where we have some kind of point of contact so that when folk are diagnosed,they get in touch, we could send out information to them, contact points etc information on procedures, and hospitals that could help- ( free of charge, I found that with the TNA UK site which required payment, although fine in principal, I never got round to ever registering, because you couldn’t pay online, and with brain fog I was never organized enough to get round to posting the cheque off!) That and ideally I’d like to be able to send out information to have on hand as fliers within hospitals.
I know that the practicalities of this are probably prohibitive, and I am often guilty of having a set of rose tinted goggles on, but surely there is a way of doing something? I just don’t know what or how.
Any ideas suggestions etc would be gratefully received on this, I’d be really interested to hear what people think. Or if I’m just an idealistic fool…
Gracie x x x
I think the idea is fantastic It seems like you said lots of work… would not have the foggiest idea on how to even start such an adventure… But i believe that this would be so helpful to others… but none the less the idea is a gesture of kindheartedness and sympathy for others alike.
I can not begin to imagine the work it would take in truth, I know that charitable status in itself is a nightmare of a thing to organise, but there are so many different ways of doing these things, I would be lost.
I know it would have made the world of difference to a lot of us when we were diagnosed, even to have been given a hand out, would have felt like something to work with in the early days.
It’s just that I’ve been through all those initial emotions myself already. This disease is just so difficult to go through as it is, without the battle of searching for information too, if the information is there for you it at least takes some of the pressure and frustration out of an already bad situation.
The feeling of being lost isn’t nice, and I’d like to be able to make this whole thing easier for folk, even if it is is some small way. I dunno.
Thanks for replying though. much love
Gracie x x x
I think it’s a great idea. It kills me when I’ve seen the comments of people in extreme pain, on other sites, that they can’t afford to see a neurologist or a neuro-surgeon until they can get medical. I couldn’t imagine dealing with that kind of barrier. I feel quite lucky that I live where everyone has medical but I know not everyone does and I know how quickly medical bills can financially bankrupt a person or a family.
I think we need to find a celebrity with GPN, hopefully not Lindsay Lohan, Britney Spears or Charlie Sheen. Preferably a Michael J. Fox type with a high degree of likeability.
Ron you are right, everyone loves Mr Fox! Bless him, the poor soul has enough wrong with him, we wouldn’t want to wish this on one of the likeables, maybe on one of the hated-but-take-seriously-a$$holes-. Raise our profile a little.
I but jest, I wouldn’t wish this on anyone.
But it is something that needs to happen, some way some how, the fact that there are so many people out there with no place to turn, is heartbreaking, whether it be through lack of insurance or medical ignorance, there should be a way to help.
Damn it I will figure out a way to do this, I don’t know where to start, do you go for charity, or non profit org, can you apply for funding if you are a non profit org? What about W? What about X? What about Y? What about Z?
So many questions to ask, and so many if’s but’s and maybe’s, but then again why should this be any different to any other aspect of this disease!
x x x
I wasn’t wishing it on anyone, just thinking that many foundations were started by celebrity types after a personal experience themselves.
Actually my biggest brush with fame is that I grew up across the street from the apartment Michael J. Fox grew up in. We went to the same schools but he was two years younger than me. He was a hockey nut and there was a group of us that always played street hockey under the lights of a nearby shopping center parking lot. He seemed like a nice enough kid.
Anyway, I think chances of finding a high profile person are even slimmer than I thought. I saw a stat yesterday that puts the incidence of GPN at about 1 per 100,000. If that’s accurate, that would mean there are only about 60,000 GPN sufferers in the world. Of course that’s 60,000 to many, but I had no idea it was so rare.
girl anything that brought awareness is a definite in my book! i am so tired of feeling in pain and sick and feeling like you have to explain this illness and the pain to people over and over. and on top of that them thinking you are trying to garner sympathy or something. sorry it is just a bad day so i am very pro this issue today! lol but i think the flyers are a great idea! it would be nice to be in a doctors office such a neuros office and just read on it whether you have it or not. i have had times where working at an answering service someone has called in and i thought, oh! that sounds like GN!
I’ve been looking into this in a bit more depth and it’s not going to be easy. But I think it’s something worth undertaking, so I will see what I can figure out from here over the next couple of weeks and I will keep you all posted, when it comes to mission statements and the likes I will be tapping you all for suggestions!
x x x
The Facial Pain Association has this as their mission: The mission of The Facial Pain Association (formerly The Trigeminal Neuralgia Association) is to serve as an advocate for patients living with neuropathic facial pain, including trigeminal neuralgia, by providing information, encouraging research and offering support.
I guess I shouldn’t be suprised but, after a search of the site, I couldn’t find a single mention of GPN. You’d think that they changed their name to the Facial Pain Association to be more inclusive but the only thing mentioned is Trigeminal Neuralgia.
Yeah you would have thought so wouldn’t you! Granted I think they’re a fantastic resource for info, but I brought this to their attention months ago, and also mentioned eagles and there’s been no update of it since. ( I corresponded backwards and forwards with them about it too, so I know they have the information, it’s that they’ve chosen not to include it, which I think is a real shame)
But the mission statement is probably about what we’d want to put into it.
xxx
I wonder if the Facial Pain site would set up link to this forum and/or create a tab for us to add or upload info?
I would like to hope so, but at the same time, they already have their own forums/discussions blogs etc, and we’re sistered with livingwithtn who in effect offer the same service for TN but without all the added information they have on their site.
You never know though! It may be worth approaching them, but since they havent included the information of other cranial conditions, I wouldn’t hold our breath! :o) xxx
Grace i would be interested in helping in any way x i searched for months years for information even my first neuro surgeon stated he would google but found nothing except in the usa .
There isn’t even a US charity for this, just TN, I was thinking though, maybe to set something up for “cranial neuralgias” maybe see about partnering up with the likes of one of the other existing ones so we could direct the TNers there, but as far as I can tell there’s no resource for glosso or geniculate and I reckon there’s probably a fair amount of cross diagnosis there anyway. Just a thought.
There’s undoubtedly a lot to organize, with bank accounts and stuff before you can even submit a request for status, then getting trustees on board, there’s nothing that I’ve been able to tell about the requirement of trustees being resident in the same country, but these are the usual things that tend to get hidden in small print, and there’s flippin disclosures and the likes and most of us on here and the folks that I know who might be interested in it are spread to the four corners.
I have been looking, but not taken any steps to get anything in place yet, but if you’d be game to get involved that would be excellent hun. Thank you.x x x
Hi all. I am curious about the idea of an international society, under which many of us could develop chapters in our locations around the world. I would be interested in British Columbia. I’ve got some experience with non-profit organizations locally and provincially but not on a grander scale. I imagine something international could be quite daunting and costly. I think when I have my follow-up with my NeuroSurgeon and Pain Management Specialist in January that I will try to extract their brief thoughts on the matter and maybe a letter of support from each. I also used to manage a large division for a non-profit society for 15 years and had a very good reputation so I will try to get some letters of support from them. Where I work now I’ve actually been involved with several societies helping them to enhance their sustainability and even to just stay afloat during difficult stretches. One of the ladies I’ve dealt with, heads up several organizations and actually created one herself. I think she’s got a strong name provincially for integrity and good works and I’m sure she would give me some help and a “character reference” (not just that I’m a character but that I have some as well).
I wonder if that isn’t often the case that a number of non-profits start out independently and eventually join together to move toward establishing a larger overseeing body that represents an entire country, continent or international.
Anyway, that will be my goal, to speak to these people before the end of January 2011 and then I’ll report back. If I run into anything interesting I’ll do I’ll update right away in case it’s something that could be helpful to anyone else. And of course if any of you have any similiar goals or objectives over the next while, please share your thoughts and info. I think I’m the only one from British Columbia on here so far, but if there’s anyone else, or other Canadians or even anyone from the Pacific Northwest, please let me know if your interested or even if you have your own direction you’re pursuing.
Take care,
Ron
That’s exactly what I’d like to do, but I took one look at non profit orgs and all the other options and decided that was far far beyond me. Then I started looking at charities and that seemed like something a little more tangible, that and with everything that I’d like to it all takes funding, and as far as I understand it you can’t get government grant/support without having charitable status in place so it seemed like the pest place to start.
It sounds like you’ve got a whole load of experience on this one, that brain of yours will likely be getting picked on a regular basis I think.
Much love to you x x x
Grace, may I suggest contacting your local Masonic Lodge. Sounds sort of strange but they have excellent resources for charitable causes and work. After all, one of the bodies is the Shriner Organization.
I am a Mason. Many Masonic groups are looking for charitable causes to establish. You may have to put together a presentation to a couple of those guys but even if they are not willing to help… they can lead a path that might help. I’m not sure what part of the world you come from. If you need help, I can help. Email me at ■■■■■■■■■■■■■■■■■■■
Randy V.
Hey Randy,
Thank you so much, I have to say that is something that would never have occurred to me, so I really appreciate the heads up on it. Once we start trying to pull things together on it I’m sure I’ll be in touch to pick your brains on this.
Much love and many thanks
Gracie x x x
Please do Grace. I would be more than happy to lend any hand I can.