Rosie, I wonder if you have given consideration to those of us that come here, tolearn and wish we had the rescources to donate to the foundation? Using myself as an instance, let me say this. I am thousands of dollars in Debt to Drs & Hospitals. I can just barely pay my debts and have enugh left to live half a normal life. I am one that could by what they needed and have money to put aside. Those days are gone and my limited income doesn't increase. My income is less than my outgo and It's mighty tough to live month to month and survive. Take some pity on us and if we could, I'm sure most of us would be donating. Just remember we are all under a financial strain that was unplanned.

I hear you Jim! Some of us were already in tight financial circumstance when we became ill. I was just a waitress and single parent--I never received child support, when I was diagnosed. Mostly living month to month, just before diagnosis I started to be able to start a little savings account, since the kids had gone off to college and were out of the house. The diagnosis was financially devastating for me.
That being said, when I am working full time and really back on my feet, OFC will be at the top of the list!

Jim - you just said what I wished I had said and I'm sure many others would like to have said also. When my son was diagnosed, he was out of a job, with no health insurance. I had just recently retired with a small savings which no longer exists. The term "financially devastating" is an understatement especially when there is no health insurance. But "financially devastating" is nothing compared to the thought of losing a child thru something as devastating as cancer. OCF and all the wonderful, compassionate people here helped both my son and me through the most difficult of times and I will be eternally grateful. You can be sure we would be donating if we could. And OCF will be at the top of our list as soon as the financial crisis eases. Rosie - please be patient with us and we'll get there.

Yes, Jim and others, I did think of that.
In fact, here is part of what I posted:

Now, I know some of you simply can't afford it and some may be waiting until payday, and some access the internet at the library or workplace or a friend's house, but for the majority, if you can afford to pay for an internet connection, you can afford $10 to help OCF.

Of course, the bold and underlining wasn't in the original post.

I can say one thing, this internet connectionis my lifeline to the outside world. I don't have the expensive internet either but consider it my way to reach out and not be lonely. As for this site, It's where I am most of the day off and on. Sorry if I hurt your feelings, but I always say what I think.

Jim,

You didn't hurt my feelings. I just wanted to let you know that I was not castigating all of you who don't donate. I know that not everyone can afford to do so. My frustration was with those who can afford to do so, but choose not to. I have a hard time understanding how anyone can partake of all the information and help that is available on this site and not have a desire to give something back.

I also know that I came on too strong and for that I'm sorry. I know most of you don't know anything about me, since I have not been active on the forum for a long time. For those of you who would like to know a little more about me and why I am so loyal to OCF, perhaps this link will help:

http://www.oralcancerfoundation.org/forums/ubbthreads.php/ubb/showflat/Number/62389/fpart/1

You can also click on my username and read any of my old posts. I assure you that you will find I am normally a very caring, compassionate person, who does not make a habit of getting in people's faces about donations or anything else.

Peace,
Rosie

Quite frankly I am surprised that ANYONE has taken offense to Rosie asking people to help OCF. She is not the first to do so, Danny Boy comes to mind, and he and others have done so in an adamant manner. Rosie has only picked up a torch from those who are no longer with us. She said clearly in her post, that she got it that some cannot afford to help. More than that, I can tell you that more than 99% of all the people that ever came to the OCF site for help never left a cent behind. Not all of them are in financial straits, but why support an organization or pay for something that you can get for free? It requires that you care about others (coming behind you on the path or currently in dire straits) less fortunate, and to be honest, most people are only concerned with their own issues. I deal with multimillionaires every month that have never given a cent to charity. It is a sad commentary on the human condition in this country. It is the way it is, it is part of the human nature of some (thankfully not all) and it is part of who we are. But it cerainly isn't always because of people's inability to help.

It is not lost on anyone that this cancer, like any other life altering disease, can ruin a family permanently financially and emotionally. I am surprised that anyone took the time to use their own financial situation to illustrate what is already painfully obvious to too many people in the US, (a country with a broken healthcare system) let alone to those that visit this message board.

Unlike other organizations, OCF charges nothing to get things from us. This board, newsletters when they go out, hours of help from me or others on the phone, and much more are there free to anyone who need help or information. That was always my intention. What OCF is able to accomplish is directly proportional to the income that it has, along with; my willingness and the willingness of other volunteers to work full or part time for OCF for no compensation, the donation of time from the doctors on our board for their efforts, the willingness of some companies to assist us with support of materials or funding, and many smaller things that I will not bother to list here. As demands and needs grow, (and they have every year since we were first formed) so do expenses.

Knowing specific things that need to get done, knowing how to get those things done, and NOT being able to do them because of lack of funding to accomplish objectives that would make a serious difference in the world, is frustrating to say the least. Rosie knows my frustrations from our conversations with each other. That she tried to help me out by asking, LIKE MANY BEFORE HER, that predate many of the new posters here, for people to step up in some small way, is not some kind of attack on anyone, and her expressing her frustration with the poor response to her attempts at helping, do not deserve this reply from any of you.

As long as OCF can continue to offer the things that it does without cost to any of you it will do so. But one day this foundation may cease to be here. Without corporate or private support there is only so long that it will continue. I have given 6 years of my life full time, my money and much more to make this an entity that would make a difference, not only to private individuals, but on a national level as well. I am not stating that looking for any thanks you's or recognition, so please do not comment on that statement. But I want people to realize that I won't always be here, and if the foundation is not financially self sustaining when that time comes, and there is no funding to pay someone to replace me, or to pay for the continual updates to the web site, and the costs associated with the operation of our web efforts like the board and current peer reviewed information that the site contains, to have speakers out in the world of professional and public education, and lobbying those in power to effect change.... it will just go away. It is that simple. And what I spent the last years of my life fighting for will be for naught. That is a situation that leaves me feeling profoundly sad at its possibility.

Personally, given all the people who have asked on these boards for people to dig deep to try and help us out before her, I don't think that she came on in any way that is negative. I certainly do not think that she needs to apologize to anyone for anything. If it were not for people with passion, nothing would ever happen in this world.

Well Rosie, it seems I owe you an apology . I'm not above ever admitting I made a mistake. I apologize for misreading your post. I will double read the posts from now on to save myself the embarrasment of misquoting. Have a good night. Jim

For the record, I would like to make it clear that I find asking for donations in no way offensive. Many times it is the only way that people will know to donate. Guess I was just trying to commiserate with Jim. Just in case I came across as ungrateful in ANY way, I would like to apologize to you Rosie, and to you Brian. You both have the best interest of the website at heart, and clearly have a passion for getting the word out. I am making an effort to pick up the torch and get the word out in my little corner of the world. OC can make us moody, especially while in the midst of treatment.

None of this is necessary. Everyone is dealing with difficult things. It matters not if they are in treatment battles, in emotional pain, suffering a loss, or playing the role of Sisyphus (Goggle it) against what seems an intractable infrastructure and disease. Any of these situations is enough to make even those of us who care about each other deeply chafe against one another occasionally. Enough recriminations and apologies. We all have challenges to deal with. Tomorrow after I am sure the last person involved has signed on and read this thread, I will delete it. It is nothing more than a minor private disagreement between friends and family.

Rosie,
sometimes you cannot win them all. (or even just a few of them as you found out).
Your intentions were good and the cause was worthy. That says enough, the rest is just noise. Keep reminding us! The fact that less than 1% (from Brians post) contribute is a disgrace. It does not say much for us. Granted, not everybody can contribute, that is understood, but that can only be a small fraction of the people. For the large majority it is a matter of priority a lack of integrity, or hopefully just a lack of opportunity to to the right thing. Actions count ... and everybody knows exactly which camp they belong to.

Anybody can go temporarily off the deep end, especially if you are in treatment [you are miserable, drugged and probably not that coherent either]. I had the attention span of a gnat myself!

Markus

It seems an unfortunate fact that a lot of the people who get the most use out of this site,are sometimes the ones who can't put anything back into it.It is their only lifeline,and gives them much needed support and information.During the course of their treatment and recovery,many hours will be spent reaching out to possibly the only human contacts they may have who understand what they are feeling and going through.
Friendships are formed and gratitude becomes overwhelming sometimes,and always at the back of the mind is the awarenes that all this is possible because of a few people who were able to go the extra mile and set this web site up.
Of course we are all aware of the magnitude of the project,and of course we are all aware that it is costing us nothing,and for the majority the desire to put something back is overpowering.
But for a lot of people,the day to day task of paying bills,putting petrol in the car and paying rent,take up every penny they have,let alone the burden of medical bills and no immediate prospects of earning any money.Many here have been forced back in to work against the advice of their doctors because if they dont they will lose their homes,have no insurance and no pension plan.These are the people who feel the greatest need to repay the oral cancer foundation for everything they have done for them,and these are the people who feel excruciating guilt at not being able to respond to the pleas for cash.

At present i live on disability benefits amounting to a total of

I'm a big guy with big shoulders and accept the reactions to what I might say. You are right cookey, I would give anything to be able to contribute to the Foundation as anyone that knows me will agree to. It you don't get your toes stepped on a few times ,it means you must be on the move.

Amen Brian. I never get angry with anyone, believe it or not. 5 minutes and I'm over and have forgiven and I hope all on here are that way. Like they say.. things happen. Sorry again Rosie and I hope we can be friends. I wish I could shake this feeling of guilt. I have never hurt anyone intentionally . I like to be the person trying to make anyone feel that the world loves them no matter the situation. I ran my mouth and now must live with it. Have a great day all.

I will probably get slammed for saying this, but laying a guilt trip on possible contributors is not a very positive way to get donations and may even turn a few people off. I contributed what I could monetarily and I'm not about to confess all the ways my son and I are financially "challenged" as an excuse for not contributing more. The person who gives one dollar when he/she has only two, in my estimation, is giving way more than the millionaire who only gives 1,000. Using the guilt card for getting donations from healthy, financially stable individuals is one thing, and it may or may not affect their enthusiasm for donating, but when the guilt falls on those who are recovering from cancer with all its horrible effects including depression and an already established sense of guilt from having lost their previous way of surviving and providing for their families, I just don't think it is a very nice way to do it.

Jim - you have no reason to feel guilty. You have already contributed in many other ways that I'm sure have been appreciated by many (including me).

While I admire the drive and hope to raise money for the cause, I must also say that contributing doesn't always necessarily mean money. There are many on this board who have given their time, input, and advice, that has been instrumental in personally getting me through this ordeal in my family.

I think it's really disturbing that only 1% of the people who use this site ever give anything. At the same time, though, my husband and I are soldily middle class and I have pretty good health insurance, but the whole cancer and after effects of treatment have still cost us a couple of thousand every year, at the least, which has depleted our savings by a chunk--and that doesn't count trying to save money for the future should I ever need HBO therapy because of a toooth extraction which my insurance probably wouldn't cover since it won't cover anything related to oral surgery.

So I give, but not as much as I would like. I think those of us who have benefitted from support here probably uniformly feel we can't give as much as we would like, regardless of what we can give.

I think this open discussion of this is actually good for all of us, though, and I am wondering if maybe you would considering locking this after a certain point, but not deleting it, Brian.

Everyone,

I'm sorry I didn't respond earlier to Jim's apology. I had no idea this thread was taking such an ugly turn. I really didn't feel it was necessary for Jim to apologize, because he did not offend me. I only replied to his post to begin with because I wanted him to know that I do understand that not everyone can donate. I copied the snippet from my previous post to show him that indeed, I did understand that, right from the beginning.

I'm not sure where some of you are getting the idea that myself, Brian or anyone else here is trying to lay a guilt trip on you. It has been repeated several times that we know that not everyone can donate.

That is about as simple as it gets and I'm not sure how else to say it to get you all to understand. I think maybe some are trying to read too much between the lines, but there is nothing more to read. It is exactly as stated. We know that you can't all donate. We appreciate the donations that are received. And the donations of time and compassion are appreciated, too. This web site wouldn't be what it is without all the caring people who give of their time to help others.

I agree with LarrysDaughter. The reason I feel so strongly about continuing to support OCF is because of all the help I received when Heather was fighting this monster and the support that I continued to receive after she died.



Jim,
Although it was not necessary to offer it, I accept your apology.
I'm okay if you are.

Peace,
Rosie

Anne Marie - I can't believe after my attempts to put this all in perspective and put it to bed, you feel like you have to come back and have your say again. You already made your point in your first post, and you speak as if these postings were directed at you, when you well know it is not, as you have supported OCF in many ways. I don't get it. The part about laying a guilt trip on people is out of place. I don't think that OCF or anyone that has tried to help us has used any "tool" such as this to make things happen with conscious intent.

Liz - where do you see someone trying to make Jim feel guilty? Jim started the thread, no one brought this up and the picked someone (Jim or anyone else) to lay some head trip on. You guys are talking like people are overtly trying to manipulate others feelings... I think that is pretty far from the truth of the issue, and people are reading their own issues into something that wasn't directed at any of them. Heaven knows that if we were pressuring people emotionally, verbally, or in constant contacts, we probably wouldn't be where we are financially, we would be stable from month to month. The foundation would have the money to pay for some infrastructure people-wise... but that hasn't been the case. Or we could just charge an annual membership to use the forum, or access information. Have you received tons of emails from people representing the foundation asking for money? I don't think so. Has anyone representing OCF called you on the phone?

Try participating with one of the big cancer charities and give them your contact information - you'll have a taste of what real professional fundraising is like. I don't care for that model, and that is probably to the detriment of OCF. I could not be sorrier that I gave my email and phone to a couple of them, and especially that I even gave them a donation. I get to hear from some new salaried fundraiser every month, telling me why I need to continue my support. They call it relationship building... I call it something closer to pressure selling. Having been on that side of things, I have done a rather poor job of fundraising for OCF by any comparison because I don't care for it. I just figured that if people got something, when they could, at a level they could, they would give something back. Not their life savings, but maybe as much as they spend for lunch at McDonald's once a month. I now understand that that was very naive of me to think that way. Still I'm reluctant to change.

What would have happened if we had charged each unique visitor to the OCF site last month one dollar for access to it. About 70% would have looked somewhere else, and the rest would have paid and generated serious money for the foundation's efforts. But while that seems like a good idea, when people need an answer, need advice from someone that has been there before, need to talk to someone like me at 10 PM on a Sunday night (my number is right on the contact page of the web site) the last thing I think they need is someone saying OK, for a price... no matter how cheap that price might seem.

I'm tired of this thread, I am disappointed with the tone and insinuations that are being made in it, and with much more. This thread is closed. If you think that it should live on these boards where the foundation or people who put themselves on the line to try to help it are made to look as if they are manipulative, and those stating as much appear to be...... (I think I'll just stop before I step over a bad line in the sand.)

I am asking Gary and a couple of other trusted posters and monitors to watch the boards more closely for the next couple of weeks. I need some space from this.