Brian Hill, OCF Founder/Executive Director and Stage IV Oral Cancer Survivor
My wish is that in December this year the Oral Cancer Foundation can count on your help to fund our continued activities in 2020. Even as lean an organization as we run, with only 15% of each dollar going to fundraising or operational overhead, and the rest being applied to our cause-related missions in 2020, we still find there is never enough funding to address all the opportunities that we know need attention.
Historically, OCF’s financial support predominantly comes from those we have served, individuals who understand the chilling touch of this disease personally or on a family member’s life; and from those who work with us in the medical and dental communities that have first-hand knowledge of what OCF accomplishes. The truth is that we are just the vehicle to manifest their desire to better the oral cancer problem and bring this cancer down from its high ranking as a killer. Our ability to do so is directly tied to their support, both financial and as volunteers. It is this benevolence of thousands of private individuals that make each year’s activities and progress possible.
I am hoping that this year, we can count on your support and financial partnership to bring tangible, positive change to the world of oral cancer. Only together, when thousands of individual voices unite into a single chorus and a unified course of action, does progress occur.
I have been told by people who understand this process of keeping a non-profit financially viable better than I, that if you wish to ask people for their help, for their donations; that you need to be concise and to the point, and be direct. For them, my opening paragraph certainly fills the bill. But as you are about to see, I do not entirely agree. That is because I personally would not give to a charity that I did not know something about, one whose staff were unknown to me or their perspectives and ideas to create change explained. I would also like to know or have access to what others who are respected in the non-profit world say about them. Platitudes describing lofty intentions written by a great PR firm, or an organization with the little history of delivering on those intentions do not move nor satisfy me to become engaged or donate. I’ve learned to recognize things like the subtle wording in the PR world “We support research.” Well, of course, we all support research, don’t you? But at the end of the day that is word play, supporting it, in theory, is different than FUNDING it. At OCF we say we fund it because our name appears at the bottom of lots of peer-reviewed, published in high quality journals, research work that we have helped explore, (through the generosity of our funding donors) to actually spend money on. More than that, I desire a relationship with an organization I support, and if I believe the cause to be noble and their abilities equal to the task, they will have my fidelity for a protracted period of time… as nothing ever happens overnight or easily. I am not a “one-time, write a check” kind of donor, as I know that only tenacity and innovative approaches applied over long periods move the ball down the field. If you are like me in this thinking and would like to learn more about why OCF is deserving of your support, and your long-term fidelity, you may want to read further…
It was 20 years ago this month, that I received the news that the swelling on the side of my neck was a cancer, and that it was very advanced, a stage 4B, bilaterally metastasized cervical node involved oral squamous cell carcinoma. There is no stage five…. A gambler would not have bet on my survival given this very late discovery. As an athletic never smoker and light drinker, I could not have been more shocked, given what my doctors knew at the time about risk factors for the development of the disease. (HPV was not a known causative etiology when I ws diagnosed.) I was certainly not typical.
I came from a big pharma and implantable device background, and as such, I was a science-based information junkie. In 1997 the Internet was not what we know it to be today, Google was just beginning to amass searchable information, and the medical databases that it is so rich with today had yet to be cataloged. In essence it couldn’t really find its rear end with both hands. But what an amazing thing it has now become all these years later. Facebook, Twitter, and social media were years away from even existing, and there were only a couple million web sites in the whole world, which has trillions today. Bottom line, going into treatment I could not find out much about my disease other than what my doctors shared with me. My frustration with this was profound as I have always been a big believer in the saying that “chance favors the prepared mind.” Making informed decisions, the way that I help others choose their treatment paths today, back then was no more than picking a good treatment facility – mixed with a fair amount of trust, as few resources were available to help my decision making.
Suffice it to say that the treatments for oral and oropharyngeal cancers are brutal by any measure. While we have made some progress since then in the world of radiation to target it better, the mainstay chemotherapies for most of the last 15 years have remained pretty much the same. The depressing statistics related to survival, and the morbidity of treatments to those undergoing them remain a formidable emotional challenge to accept. I won’t explore the depths of difficulties that I endured going through it all, as my journey was more similar than remarkable compared to so many that have been on this path with me. That journey is chronicled on the Oral Cancer Foundation web site should any be c