Leslie

Thanks again. Obviously I am flummoxed by their Web site's organizational architecture. I had just clicked on Newsletters on the main page which gave "current" articles and since they were so old, I didn't think to check the "archives" link.
Like yourself, I ordered the Bristol Meyer book yesterday without donating nor joining. I think Big Pharm can afford it.

Brian
Wow - Her published list of corporate sponsors: Amgen, Atos. Bristol-Meyers Squibb,CEL-SCI, EKR. Lilly, Sanofi-Aventis, and Varian is impressive. I can't speak for others, but it would not bother me a bit if OCF put up a similar special web page touting corporate sponsors providing of course they gave OCF sufficient funding. Of course, I know ZERO about getting funding from corporations as has been explicitly pointed out to me by many NFP organizations here in the DC area after I've applied for executive positions.
Charm

Her partner in SPOHNC that helped her start it almost two decades ago was then a powerful doctor at a major cancer institution. This is the same case for the head and neck alliance. When those companies came to the institution looking for other "help" with pending drugs or trials, he pointed them at the organization. So the relationships, some of them, stated out as a quid pro quo, or at least a formal introduction. It has been difficult for OCF, even though our list of accomplishment each year exceeds all other head and neck organizations combined, and we have been singled out by Guidedstar as the best small cancer non profit in the US, to get the corporate support. So those core introductions were how they built their organization.

We have always lived on the benevolence of patients and their families, combined with the income from our walk events. Our science board and I have an agenda that would turn many things about oral cancer on its head if we ever had a decent funding. We have two major articles coming out in the next 60 days co-funded by the OCF and NCI, and published in the Journal of Oncology. One which is very important, is a forward look at HPV+ oral cancers in 2020 and 2030, and the view is very bad. The other is a new approach to treating patients with HPV oral cancers that is less invasive over the next 5 years. Those kinds of research pieces change the paradigm. They are not cheap. We just provided 60 ipads to institutions that are enrolling patients in that study loaded with a 75 point questionnaire that will look at things not normally included in these trials, which is the patient's quality of life. At regular intervals in their treatment they will answer questions on the iPads that are immediately up loaded to a sever at the James Cancer Center that will collect all the data. OCF's participation in this big trial will change what we know about the patient experience in a profound way, and that will cascade into better collateral damage controls, both physical and emotional for future patients. Last April in our first national attempt at public outreach through the dental community, we had over 2000 dental offices partner with us to open their doors to do free public screenings, and 54,000+ individuals were screened in that one month at no charge. In 2012 we hope to double that number. Another organization has been doing this for 9 years and they have never had more than 200 screening sites (2011) and a couple thousand people screened. That organization, that pretty much only does that and nothing else during the year, has corporate donors that bring them three times OCF's annual income. What they do with it is hard to imagine, and is not detailed on their 990 tax return like ours is. But again they have a well known doctor at their head and he has relationships with pharma companies.

OCF has never been good at raising money. It's my fault primarily, because I am focused on other things, and I don't know how to do it well. In the long run, we have to get help to do this because if we are really going to impact the disease like I know is scientifically possible, we cannot do it at our current size and budget.

Charm wrote:

[quote]I believe they would have found your description of the mask fitting as overly dismissive of their feelings. The tabloid version, scary as it was, comports with their experience. [/quote]

I am sure their description of the mask fitting and therapy corresponds with many people's experience. And yes, I have read of peoples problems on this forum. Even if you understand the need for it, claustrophobia on top of all the other stresses could easily make it a nightmare. As a scientist without claustrophobia, however, my husband found it curiously comfortforting.

Whether it is "curiously comforting" or a "nightmare", the various reactions are all valid and describe how we are all different and react differently based on our own experiences. When my son was fitted for his mask, I think my own claustrophobic tendencies caused me to worry about it more than he did - i.e. what would happen if he has to cough, can't breathe, got sick, or all the other possible 'What-ifs"? Since those first days as CG, and the beginning of his Rad Tx, there have been so many helpful replies and various ways to handle "the mask". I really like the one posted by someone on OCF not long ago about the use of a bell for the patient to signal distress. It was never used but provided the comfort of knowing help and communication were very close by. My son got through it just fine, flirting with the cute female assistants, even getting them to take his picture while strapped down.