As far as I know, this Friday will be the first time that all three major networks will be simultaneously airing the same special, at least on the topic of cancer.

I'm sure it will be a great show, but I wonder how it can do justice to such an important topic in just one hour.

Any bets on whether oral cancer will even be mentioned? I personally wouldn't put any money on it.

Brian, have you got any inside information?

Jerry

They asked us if OCF would like to BUY a booth on the convention hall. No offer of exposure for the disease, no questions about how we might contribute to the effort. Nothing.

And by the way, they asked us last week. Of course they have had the project in planning for more than a year. They were only trying to sell off the extra booth spaces.

Why am I not surprised as to how this was handled?

Jerry

Sensationalism at it best. Now watch, they'll be saying "look what we've done".

In my biased opinion, I would have thought that the OCF and Brian Hill would have been a potential draw for people. I guess I'm still bright eyed about how the media function.

Mike

You have to realize what a multimillion dollar celebrity encased event this is. They really only want the big players involved in the big diseases. Of course that isn't what they are saying but having talked to people from some other small cancer non profits besides oral, they were equally left out of everything. Hey, in the end if it raises money for cancer research it is a good thing, assuming that someone has a well vetted way for seeing what research gets funded. There are some pretty esoteric ideas out there that have money being put into them but have a snowballs chance in hell of meaning anything at the end of the day - more than $ in a researcher's or institution's pocket, and another publication notch in someone's gun butt. Lets hope they raise a bunch and spend it well. That a small cancer like oral gets left out is something that we should be used to by now.

Brian the fact that you are "used to this" etches into my brain that you are persistant and patient. I, as you are well aware, have a little bit less patience that you. I also have much less experience in positioning myself for any international media charity function. (Thank God it's you)
Is ther a way that you can vision that OC will ever be a forefront stake holder in awareness and funding for research and support?

I bet that unless the number of patients diagnosed per year, or the hard number of deaths, not just the percentage of patients, rises significantly, oral cancer will remain at the children's table of cancer fundraising.

We are getting support from high visibility people. In December there will be a fund raiser for OCF at the home of Tom Fontana ( Google him he's a powerful media guy) co-hosted by Blythe Danner and the Paltrow family in NYC. We're hoping for 75 attendees and patrons. There is an oral cancer segment on Good Morning America on the 8th of this month, though we will not get mentioned by name, the disease is out there. That was a year in the making with ABC and at the end of the day we are only getting 5 minutes. But I was able to get Dr. Gillison interviewed and one of our own from the boards is the patient being interviewed. There is more, but it has all taken years to bring to fruition, and it is a tough, long haul to make things happen. There are no big corporate players in the world of oral cancer to tap into for support. It is a grass roots effort, and our ranks are small. Low incidence of the disease compared to the really big one like breast or lung, and poor survival means few volunteers and donors at the end of the day.

I am not cynical about all this, just realistic. I do not believe that it will always be like this, but it may take many more years and deaths for this to get on the big stage and in the spotlight. But I assure you that I am working every angle available to me with the small infrastructure and amount of money we have to work with. The economy has hurt our donations in a very big way, and the last 3 months have been the worst months for OCF donations since 2002. While this is depressing after as many years as I have put into this, I have to believe that it isn't always about being rich in money (though that seriously helps) it is being rich in ideas and vision to make things happen. I'll post over the weekend of some of the visibility successes we have had recently. While they do not translate into funds that we can use, they certainly benefit the cause.

Brian,

Is anything happening with 20/20?

The information, contacts and story were taken over from the 20/20 producer by the producer of GMA, and they ran with the story that they wanted to do. OCF is not part of that story even though I put together all the people for it for them when it was part of ABC 20/20 (GMA is also part of ABC). Your name was on the list, but at the end of the day, they only picked two doctors and one survivor. My guess is that it will not be a very long story, perhaps 3-4 minutes, and with no interaction with these producers, who knows what the story will end up being after they cut it together. They have hours of interviews for a 4 minute piece.

That's show biz. It's really a shame that it got chopped so much.

Just watched the show (Stand up 2 Cancer) and thought it was well done. It was quite a production, with no commercials. I was astounded by Sidney Kimmel's 25 million dollar donation.

I'm sure that they have and will raise a ton of money for research. Hopefully this research will lead to cures for many types of cancer.

Their website is www.standup2cancer.org.

Jerry

That was in my opinion well done except they never mention us OC survivors. It would be nice to see one of ours on the next one and let people know 1st hand what we have to go thru with loss of tongue and neck dissections ' rads & chemo and the balance of our lives. Some of us would be hard to understand , but that's a part of the torture we go thru. It's good that I know what I am saying at times and feel bad for those listening.

There was someone on the show who had had oral cancer. One of the celebs I thought. I remember him pulling a modified denture / prosthesis out of his mouth. It was brief, but I think it was there.

Donna

Brian: What shall I wear to the party in NYC???

Donna

I thought it was very well done. There was an oral cancer survivor on there who was a singer and took out his prostesis. Oral cancer wasnt mentioned as werent alot of cancers. The show could have been much longer to give more important info for screenings. It showed breast check ups, colonostophy, and the turn your head and cough exam.

All the celebrities donated their appearances. From what I understand all the money raised will go directly towards cancer research. Sidney Kimmel gave 25 million, hope others who are well off follow his footsteps and give large amounts too. Maybe Im too optimistic but it would be so wonderful to see a cure in my lifetime.

Pandora.... just wear your check book.

A cheque book you mean?? Damn - I was planning on showing up in just a smile!

Donna

I was impressed by the generous donation from Kimmel, of course the Johns Hopkins cancer center is named for that family so if you are not aware they are long time benevolent sponsors of big name medical enterprises. There have been billions of dollars (with a b) donated to cancer research in just the last couple of decades, let alone the money that has been spent by the NIH (our tax dollars) towards cancer research. Koman alone has raised between 600 million and a billion all alone during its lifetime. I mention all this to giev you some idea of how complex the problem/idea is. Billions of dollars and decades of research and it still kills someone every minute of eery day.

Also there is Sidney Kimmel Cancer Center here in San Diego.
Although the main campus is strictly a research center, the Cancer Center where I was treated at is an affiliated center.

I believe John Hopkins Cancer Center is also named after Sidney Kimmel.

Pandora - Just to be clear, the event is December is being hosted by the Paltrow family for the Bruce Paltrow Fund, which is part of OCF. Its primary function is to get the intimates of theirs, and philanthropic people out of big business ( captains of industry) together to raise money. I have high hopes for what this can do, but I have also learn not to count my chickens too early.

It appeared to me that the appliance pulled out of the mouth of the celebrity (I also can't remember who it was) was an obturator, so he must have had part of his palate removed.

Sidney Kimmel's philanthropy is not limited to cancer, as he has an phenomenal entertainment center in Philadelphia named after him. I've been there several times and it was a welcomed addition to the Avenue of the Arts. I can't remember how many millions have gave for this.

Jerry

I only saw my dad's obturator one time, but when the guy pulled his out of his mouth it resembled what I remember of dads.

I like the attention that cancer is getting in the media lately. See a lot of it in Toronto, through all the big hospitals and awareness campaigns.

I Tivo'd GMA this morning and just zipped through it. If they did the piece I missed it. I did catch Robin Roberts mention that Stand Up 2 Cancer raised over 100 million dollars.

Did anyone catch anything about Oral Cancer this morning?

Jerry

I watched hoping it would be on but I didn't see it...but I looked away a few times to talk on a phone conference. If it was on, it had to be a really short piece, I didn't turn my attention away that much.

I'll check it again when I get a chance, but I doubt it was there.

It is tomorrow morning I am told. TUESDAY. So let's check it out again and hopefully find that they got the story right.

I tried to catch it this morning as well, did not see anything. I will tune in tomorrow.

Susan

Well that's two days at two hours apiece trying to catch this. I guess if we do not have any better information about playtime I will have to miss it.

Since this was discussed recently about how much was raised at Stand Up, I though I would get some of the most current numbers for all of you. Just so there is some perspective on how much money is spent EACH YEAR on cancer research in the US ALONE, in 2006 the number was $206.3 billion. A major portion of this is your tax dollars via the NIH/NCI, followed by private funding. I can't begin to tell you what a miniscule part of that had to do with head and neck cancers. I haven't calculated it, but the number (as a percentage of total) I can guarantee you, BEGINS with a decimal point and has at lest three digits in it, the first being a zero.....

So it's Wednesday and I jsut buzzed through my TIVO recording of GMA and it wasn't there. This is TV and it reminds me of exactly what I went through waiting 4 months to see my TV interview get aired. I was told over and over again that it would be on next week or the following week etc. etc.

It will surely be bumped again tomorrow when GMA takes on the "Lipstick War".

What sells commercials? Oral Cancer or political fluff?

I never used to be so cynical!!!!

Jerry

Brian, I came across this topic and I'm hoping you will send me a personal email (I emailed you personally over the weekend). I previously gave to Stand Up to Cancer thinking it was an excellent cause and then I found your site. My husband is newly diagnosed with oropharyngeal cancer stage 4A and I want to donate a percentage of our cancer insurance proceeds. I would like to know how you determine where your donations are distributed. Thanks!

I am out of town lecturing until Wednesday, But I would be pleased to talk with you on the phone when I return. Please be sure to send me your number in an email and the best time to call. I will be happy to answer all your questions.