I've been to a couple of the HNC Support Groups here that are sponsored by SPOHNC. Mostly because the woman that is the facilitator of the meetings is absolutely wonderful. She, through Porter's Cancer Center, provides free one on one counseling to head and neck cancer patients.

At the meetings I went to, I gave everyone one of the OCF bracelets, gave them information about this wonderful website and about the 1st Colorado Oral Cancer Walk!

Cathi

I took a look at their website, and decided I much prefer OCF. The local chapters seem to be in large cities, and I live in rural NW Ohio. The closest chapter to me would be Cleveland, which is 2 hours away. They don't seem to offer the online support that OCF does, and that is so valuable. It would be nice if they did refer people to OCF, because I think that there is room for both groups.
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There is room for both. I also went to SPOHNC meetings in the first couple of months. I think that each group in each city is very different (I went to three different ones in so cal) Any group is as strong as the most knowledgeable people in it. That was the problem I had with my face to face groups, no one knew very much. Where they really excelled was the human emotional aspect of it. But I didn't learn things that helped me from my contemporaries there, we were all right out of or still in treatment. One did have a nurse as the moderator, but she didn't know much about non clinical things like research, HPV at the time, and stuff I wanted to explore. PLease do not take any of this as negative feelings about SPOHNC, whose founder, Nancy I like a lot. It's just trying to compare apples and oranges. I wish we took in the 7 figures a year that they do, but that's another story.

The second thing I didn't care for was a hurting as I was, I wanted to talk to someone regularly. I mean almost daily as I was trying to sort out what I was feeling, and finding out about my disease. The groups met once a month. (that's why I bounced around to three different cities, so I could talk to some one at least three times a month. All the groups were more than 1.5 hours drive away, and this took some serious motivation and time to make things happen for me.

When I started OCF, the forum was meant to overcome what I found lacking in those groups. But obviously it lacks the personal touch, look in the face, hear the tone of the voice components of a face to face cancer support group.

So I think there is a place for both ideas, and both serve valuable functions even though they are very different mechanisms for accomplishing the same thing. Having said that, I occasionally post on some head and neck cancer list serves, and another web support group. They are nothing like OCF, and there is on one of them, no regulation of things that people put out there, some of which is completely wrong info, part of it harmful. Some people have left OCF in the past because it isn't a democracy, or we were hard on alternative therapies. I understand their feelings, but I also believe that we must be careful what we advocate for. So for some, the oversight part of OCF is not their cup of tea.

[quote=Charm2017]SPOHNC focus appears to be different - local chapters meetings, no internet forums. Their resources links are quite comprehensive and include obscure sites - but THEY DO NOT MENTION OCF AT ALL NOR DO THEY LINK TO OCF even though they do link to other competing cancer sites like the former Yul Brynner foundation (they still have the old name even though it is now Head and Neck Cancer Alliance)
[/quote][quote=zengalib] It would be nice if they did refer people to OCF, because I think that there is room for both groups.[/quote]
SPOHNC does include a link to OCF on its "Supportive Care"/"Resources and Links" page. It's under the heading "Resources for Oral and Head and Neck Cancer" -- not under "Cancer Organizations" or "Support Organizations."

Leslie

Thanks for correcting my error that OCF is "not listed at all". although it's lumped in the same category with Delta Dental which is an insurance agency. I had just assumed OCF would be under the other two categories At least they did put OCF on the supportive care page.
IMO OCF is the premier support organization for head and neck cancers but I'm a big virtual support fan.
But you are right and my statement that they do not list OCF is incorrect. I went back to edit that from my post but the time has expired. No problem, posters will see your timely correction. Thanks again.
Have you found out if they have issued any newsletter the last four years?
Charm

[quote=Charm2017]Have you found out if they have issued any newsletter the last four years?[/quote]
Newsletter archives on the SPOHNC website go through December 2009.

I got a newsletter in the mail earlier this year -- I'm not a member, but had ordered SPOHNC's guide to treatment ("We Have Walked in Your Shoes") after my husband was diagnosed (and before we knew he wouldn't have to go through chemo/radiation/surgery so didn't need to keep track of everything related to that). This was more than five years ago, I've made no donations to SPOHNC and the book was free, so I'm not sure why I'm still on the mailing list.

There was a point where charm was right and they didn't, but that has changed. When OCF started getting legs around year 4-5, they felt that we were "competition". In the non-profit world, like in the private sector, there is real competition for relevancy, and for donors. That's the only reason that The American Cancer Society won't let us put up oral cancer booths at their events, they are afraid that a head and neck cancer patient might start working to support us vs. them. Even with a billion dollars a year in donations at ACS this happens. Others in the head and neck world have at times felt the same. We put everyone on our resources page for the most part, except some that have little resources to offer. But this is a reality.

Nancy/spohnc eventually realized that even today OCF does not have the hundreds of thousands of dollars coming in from Bristol Meyers Squibb (who paid for two printings of their book, and all the prep work to make it ready to print) and other big corporate sponsors that they do, and feels less threatened, meaning they can link to us now. But when asked if they would partner with us in April last year when we had 2,000 screening sites around the US, like the ADA and others did, they said no. It's all very strange, as you would think with common goals, we would all work towards the same ends, but that doesn't actually happen. That does not mean that I don't think they bring something to the effort, and we can with a civil approach to each other, coexist.

Maybe a little injection of altruism will help the reluctant with common goals to coexist in their efforts and concentrate more on the results than on who has the most marbles. What so attracted me to OCF in the first place is the altruistic nature of all those involved.

Wow - I guess those kind of politics exist everywhere- not just in the business for profit corporate world.

@ Brian: I remember our conversation about many NFP's allocation of income being more about building and sustaining the organization rather than actually providing services to the target beneficiaries. As such, funding maintains brand recognition but doesn't do much else in addition to keeping a charity in the minds of donors. It's a cycle of advertising and administration to get donors to pay for more advertising/administration to get more donors.

Brian, if it wasn't for your selflessness, the OCF would be little more than an ad fund. Thank you for making the cause your life's work.