Hi Brian and All:

I'm not sure if this is the right location to post this message but my thoughts do fall along the lines of activism because I'm wondering if my following inquiry could potentially change our availability on this forum to each other and the public in another positive way?

Many of us from the OCF board correspond regularly by private e-mail and instant messaging in addition to the posts we do here on the site.
We also often pass messages along from one member to another. In short, Brian created this incredible network and now here we are bigger than life networking probably more than Brian ever dreamed!

A few of us had the idea that a designate dtime to do a live chat on the board (or a separate designated chat room) might be fun and helpful so those of us who are interested could dialogue in real time and all together.

Is this a possibility?Clearly, the logistics of setting it up may be tricky and the time zones are a factor but it might be worth trying.Maybe some of us who post regularly would volunteer to faciliate a session? My thought was one type of live chat for the regulars and possibly one set aside for newcomers with questions.

Not intending to make more work for you, Brian-but you do like new ideas so here is one!

TTFN,
Kim

Kim,
Funny, I was reading one of the pages here and it referred to a " chat room" and I was thinking, just like you, " Wouldn't it be nice if those of us who like to come here every day could chat in real time ".
It would be great if there is a way.

Danny G.

It's a great idea, and it has been on the table for a while. The first issue was to ensure that we had a population of regular visitors who would actually use it, and I believe that we have reached that point. The second would be to initially set up a weekly meeting, (not that it couldn't be used by anyone at anytime, but this is also a function of the type of software we can afford to buy and put on our servers). Lastly, we have to pay for it. It has been a function of $$$$$, since the software to run it doesn't grow on trees, and decisions had to be made regarding what was the most important thing to accomplish first. For instance, we are just about ready to put up a very complete section of the web site on reconstruction after surgery, with the assistance of the doctors at the UCLA Maxillofacial Clinic. I felt this was important, and their wealth of cases and images would answer a lot of questions. Building a whole new section of the OCF site after writing it all will cost about $5k. To put this into perspective, OCF has received $250.00 in donations in the last 6 months. While we now receive about a million hits a month (80% from the US, and last month the remaining 20% from 76 different countries) on the site, the number of individuals who are actually willing to financially support the effort is actually quite small. I guess it's one of those why buy the cow when the milk is free kinda things...... Chester our webmaster will be back in a week from the east coast, and I will have him begin to explore in detail the logistics of it all and the costs. Maybe Santa will bring OCF something this year, like a corporate sponsor, or perhaps a benevolent individual.

Hi Brian:

Somehow I knew there was a catch in the idea and I suspected the almighty dollar might be a factor!

So, being that this is a grass roots organization that is doing an amazing service, maybe we need a grass roots approach to tackling this issue. You hoped for a monster and now you have one..so let's figure out how to use our size and strength to maximum benefit.

Could we poll the crew of posting regulars and see if the idea of live chat is appealing? If so, maybe we could each contribute a set amount to get the project up and rolling(those that can-no pressure)? Dave also wondered if the chat could be linked to an AOL chat room which might be cheaper?

I'm not one for advocating membership fees, but I'm wondering if that will be a necessary step as the OCF evolves?

It is clear the service you are doing (the new reconstructive component sound awesome!) is incredible.I look forward to visiting this site every day and it is sustaining me through the recovery process. I look to you as a guru and recognize the valiant efforts you make daily to provide support and information to us that is cuttting edge.

But, maybe it doesn't have to be just you anymore-tell us what is needed and maybe some of us could volunteer to help in small ways that would increase the cummulative effect. Oh god, radiation terms again- I don't mean the bad kind of cummulative effect-you can see what's on my mind these days!)

Just some thoughts as the dialogue continues. Let's hear from others!

Kim

Clearly OCF is at a stage where the next leap to a higher level requires more capitalization than Ingrid and I can float. Besides the message board and building the web site, there is so much more for the foundation to do. We need to begin a lobbying effort in each state to require mandatory continuing education credits for dentists in oral cancer screening and detection. Then we need to begin a public outreach to drive the American public to them once they are up to speed. We are engaged in an ambitious project to put together an educational CD/DVD, which will have on it a 30 min QuickTime movie, as well as the same movie in DVD format, showing these doctors how to properly look for and recognize oral cancers. The CD will have additional resources, references, and text coving the topic in great detail. There will also be a self-test on it that they can take and get CE credits from either the ADA or the AGD. (Every year, every doctor MUST have so many CE credits from courses, seminars etc., in order to keep his license active). We intend to get this CD into 120,000 dentist

Hi Brian:

This is Kim coming under Dave's screen name but on behalf of both of us. I am continually impressed by your dedication and willingness to help others in need of resources about oral cancer, including health care providers who are a relatively uninformed and untapped group. I am willing to take on what I can with regard to a role lobbying with my colleagues.

Feel free to assign me a taskette and I wil gladly oblige. You are doing worthwhile and amazing work here. The "roadblocks" you are currently facing reflect growing pains and you should be proud! Personally, I know that this site impacts my daily existence in ways I never dreamed possible. Please let me know how Dave and I can help.

Kim

Has anyone thought about locally going public with their stories, like local newpapers? Since we are grassroot, maybe that would help to get the word about all of us and the great benefit of this site to so many.............just a thought

Dave and I also thought about the possibility of posting something about the foundation in an advanced practice journal for certified oncology, radiation, and pain specialist nurses/nurse practitioners. I get the feeling many health care providers don't know what is available to refer patients to for on-line info and support. In our case, the social worker was willing to help, but the resources she had were fairly scanty. The SPOHNC meeting I attended was a disappointment because the info being discussed was so many steps backward from what we talk about here which is more state of the art. Seems SPOHNC could also offer web sites for members to access.

I like Dee's idea of newspapers as a venue.The other thought I had was creating an OCF pin that can be distibuted with web site and foundation information in our respective geographic areas. That task could definitely been done at the grass roots level and it did work for the breast cancer and the HIV folks.

Kim

I have been very disappointed in SPHONC. They charge to join and all you get is a monthly newsletter that contains very little information. A friend of mine is their local guy and diligently tries to conduct a once a month support group, but only a couple of people show up.
This website is so far ahead of SPHONC. Their website ,if I remember correctly, does not even contain any cancer information.

Danny G.

You have some great ideas here. Obviously there is nothing more compelling than a human-interest story in a public medium like the newspaper to bring attention to the OC cause, and maybe even to OCF. These articles raise public awareness and might even attract the interest of a potential sponsor (individual or corporate) for OCF. Also getting those involved in treatment to refer their patient population to OCF's site and survivor forum will bring about some professional awareness, and hopefully help others that are looking for support and answers to the questions that all of us have as we travel this road. Some of OCF

Hi, This is more long term but, how about writing a book? Kim says she is writing one, and I KNOW Brian could write one. There is a lot of material in these posts that could be used. I would like to see a positive side, I am tired of looking something up and getting that 50% death rate thing. My son is an Editor for a publishing company in NYC.He is in Political Science , but he does have an intrest bacause of me.Think about it.gnelson

SPOhnc, whatever, always gives us the positive side, in fact they did`nt even want to hear from Packer...........my son is a writer too, and Packer can write when able......we need the truth out there now!!!!!!!!!

We, with the right writing assistance, could put together a good book for oral cancer patients. The core information already exists on the website. Then there are the many message threads that could be added. It's a great idea. But we need an interested publisher, for something that will have a limited readership

Packer and I are planning a book also.......I just haven`t convinced him yet.........since surgery last year, he has written me an evening note, and I write him a morning note.....sort of like a two people journal....that`s the only way I could get him to start writing..........I think we`re a group of very special people, who have come together for a reason........I`ve learned nothing happens by chance.........WE CAN DO IT..........Dee

How much would the equipment cost to have a live chat group ? I have several contacts in the ISP industry that may be able to have a vendor maybe "throw in" the equipment. What would be involved ?

Dear Brian,

I understand the limitations of publishing a book on our condition, but what if it was done in the form of the "Chicken Soup" books? These books gather short stories of human victory over major obstacles. Some are inspirational, some are sad, and others down right heart-breaking. But, you come out with a feeling of hope. This is what we all want to convey. And the statistics could be included in the forward and on the front and back flaps.

I really believe that America is looking for causes. And this one is not something that most are aware of. But if brought to the forefront, I think the outpouring would be tremendous.

I have an address for ideas to be submitted to the publisher. They are always looking for new tales of inspiration. I really want to think that they would be interested in ours.

I have no idea how the proceeds would be divided....or what the business side of things would entail. But I would be more than happy to submit a letter and see if they are interested. I'll probably need help though Brian....you are the most articulate!

Mandi