What is this all about? Seems like the Yul Brynner Head and Neck Foundation has changed it's name but is this a proprietary oral, head neck cancer awareness week thing? they have a slick media kit that would seem to be easy enough to adapt to OCF's more meaningful work, this came up in my google feed
Heres that link: OHNCAW
I am sure Brian and his group know all about this but with the proliferation of people asking for money, I don't want OCF to get left behind because it does not spend all its money on advertising and salaries like some of these so called charity cancer groups do (not that this one does, I have never heard of it before)

They never did anything when they were Yul Brynner foundation, their current "new name" web site is full of platitudes about what they do (nothing) and no substance, no research grants, no public awareness programs, except the one NASCAR thing in one state, nada. No working congress for funding ( I've made four trips in the last year), no working the NIH, NCI like OCF does to get more funding for public awareness and early detection... read it carefully, it says they are going to work towards things. Bottom line they do 't actually do things, and they are not a certified IRS non profit yet to my understanding, yet they are asking for donations. The name cahnge ( I hear) was beacuse their previous funding from YB dried up, and they were a non entity in reality. They kept the same web address, so people clicking on the old YB link would be taken to their new site.

If they were really going to be doing something meaningful, I am all for as many people/organizations out here working for a cure, and all the other things we need. But these guys have a poor history of accomplishment. Who knows, maybe they will get better. But except for their two corporate donors they never raised much money (as YB), and that they spent on window dressing.

Terry Day has his own way of doing things, and for years they have never done anything. We, NYU, and the Cancer Coalition jumped on them two years ago when they tried to change the name of oral cancer awareness week (notice no organization name) to the Yul Brynner oral cancer awareness week in a bunch of press releases. This was a ploy by some PR firm they hired to get on the map. It didn't fly with the rest of us that had been doing this for years, some longer than OCF. Everyone jup all over their case. They have made a ton of enemies, and their message board, which was just an attempt at duplicating ours, fell into disuse over a year ago, but no one there took the time to shut it down, (lame or negligent depending on your perspective )and is now full of porn ads since no one is monitoring it. Go to Yul Brynner foundation in a Google search and look at them. This "alliance" is just window dressing on an old name and organization that talks but does not do. I actually like Terry Day, and have been on some lecture programs with him, but I have never gotten this aspect of him. He's a hellava surgeon. An meaningful advocate he is not.

As to competition for money, all of us small fry specialty disease organizations will never compete with the fundraising power of ACS who raises hundreds of millions per year (and spends a disgusting amount of donated money/ millions to do so) and that group of large cancer organizations. Given this economy, I worry about OCF after the walk money. I am counting on our celebrity contacts to make up the difference in what we are committed to since our regular small donors are all suffering in this economy, and that source of funding for us has gone seriously south. We're good through the summer months, but come the fall, the commitments we have to HPV research etc. will seriously burden our ability to accomplish much of our agenda if donations continue on this trend line. People just do not have it. One day at a time we will work through this.

THis is the 1st time I have read all of the subjects in your post Brian. You have educated me yet again. Thanks for this post and enlightening me.

Brian....is there the chance that OCF will be no more? I can't think of anything worse. I just made a donation and will continue to do so if it will help.

OCF will always exist. In the worst case scenario we can survive as a web site and message board. In the best case we continue to fight in Washington DC, lecture at schools, provide free screenings in areas where there are disparities in healthcare and screening, as well as education on risk factors, are just missing, sponsoring appropriate research that aids in early detection and in understanding things like HPV that are become major players in the incidence of the disease, talking to hundreds of patients each month, lobbying for care for those that do not have it, spreading awareness through TV PSA's, lectures at universities, print media interviews, ads, and other mediums to expand the public's knowledge base, just to name a few of the the things we work on every week. None of this happens for free. It is made possible through the generosity and caring of others.

Having stated all this, I believe that OCF's future is bright as a vital advocay organization. We have had more people volunteer to run events for us this year than ever before. We have had ceebrities from the Paltrow's to Brad Pitt, Michael Douglas, and Jerry Seinfield financially support us. We have maintained the ability to build the content of our web site, and stay on top of the Goggle search finds, (which can not be bought by anyone) because their algorythm for deciding what sites are important and need to be in the top ten finds us valuable. We have had cooperative projects together with the NCI co-sponsoring HPV research work. If you look at my Facebook page you will see that I sit on every major oral cancer task force from the CDC to the Academy of Oral Medicine, and the Academy of Oral and Maxilofacial Surgery, giving OCF a voice in important forums - speaking for those that we represent and advocate for. We are on the edge of a tipping point of changing much about the oral cancer paradigm in the US, and I do not see OCF's demise.

But what I do see is in a failing economy, are that to many small non profits are closing their doors, good organizations with valuable missions, because of the poor economic climate. It's tough for many out there, and we (OCF) are primarily supported by people in the hardest hurt middle class, not big corporations and pharma companies.

My personal area of weakness is in fundraising. I can talk science all day long, give motivating interviews and lectures, but I just am not a good fund raiser. I don't understand it well. If I am not careful with every cent we are given, if I do not find others to help us, this can be a fatal flaw. We have to be creative in how we accomplish our mission. One of my early business mentors told me you can be short on money, but you better not be short on imagination nor ideas. In the future I will posts some stories of how we have accomplished much for little or no money -things that have had huge impact.

But at the end of the day, I cannot do this without all of you, your knowledge and your desire to help, or without people who are willing to financially extend themselves to help strangers. None of this means that I will not continue with this. It just means that we may expand and contract with the uncertainty of each month's income. But I personally am not going anywhere. You'll still see me posting late at night and tilting at windmills in Washington and elsewhere even if it has to take the form of an inexpensive electronic email voice instead of a personal passionate face to face meeting.

There is a mountain to move, and I am looking for others to help me pick up the small pebbles and stones, and have that group grow until we have enough help to actually move the whole mountain.

Thank you for the information Brian. As you probably know I am a newer member of OCF and it has changed my life in that short time. I am a volunteer for NJ and have been happily giving out information to dental offices in my area and I proudly wear my button everyday. Your confidence and hard work is much appreciated.