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, 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 research work that we have helped explore, (through the generosity of our donors) to actually spend money on. You can see key peer reviewed articles with our name on them in the research section of our web site. 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 23 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. 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. 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 curious. But unlike far too many, I am still here today all these years later. But why? In retrospect science has provided some answers to that; my ability to be treated by the best of the best certainly played a role even though accepted standards of care were pretty universal, but the main reason was that my etiology HPV16, conferred in me a significant survival advantage compared to those that had come to this disease from tobacco, the historic and predominate risk factor. At the time HPV16 as a cause, let alone that it gave me better odds of survival, were complete unknowns to my treatment team at one of the world’s top cancer centers.
Just over a year out from diagnosis, I was still very sick from the treatments, but in my mind grew a seed of an idea; that given my background and a small bit of personal funding, I could assemble and create a web-based entity that would endeavor to provide that information which I could not get for myself, and support others that were on this path behind me. Thinking back, it was a crazy idea. The web was an unproven thing of indeterminate value, smart phones did not exist, and the idea that a “help each other” kind of dialog between patients with this disease could prosper there in a virtual world, when combined with a collection of information they could draw from, seemed like a long shot. Nevertheless, OCF was born as an IRS registered non-profit charity and my days were spent researching and writing what would become hundreds of pages of web content, and an online support group of over 12,000 individuals.
I certainly did not accomplish all this alone, though the first 5 years were pretty solitary. There were a few early adopters of the OCF idea, and their small donations buoyed my spirits and belief that this indeed could have life breathed into it through my diligence and tenacity, and the gradual accruement of others who had drunk the Kool-Aid and become as much OCF disciples as a population that I helped and served. I worked hard to assemble the best advisors from the oral cancer world and other important stakeholders in the public health and medical / dental education realms to see that I stayed on track. It was, and still is, an impressive team of who’s who related to these cancers, combined with others who ran larger non-profits with names everyone knows, to ensure my governance was appropriate. But a seminal relationship with a brilliant young researcher I met at a cancer conference in OCF’s first year, defined in me the belief that OCF could be so much more. That researcher was the prolific Dr. Maura Gillison; then at Johns Hopkins and now at MD Anderson Cancer Center, who had just published a paper describing how a human papilloma virus, well known to be the causative factor in the majority of cervical cancers, was perhaps behind the sudden growth of the disease that was my own. Her willingness to mentor me, and my willingness to help fund her research with others, resulted in a decade and a half of peer review published research elucidating one of the most important ideas to impact the oral/oropharyngeal cancer world in decades; the increasing impact of a virus and its sexual transmission, not just tobacco in driving the unprecedented increases we were seeing in the disease.
That relationship endures today, and together we have now entered the emerging world of immunotherapeutics. The work on immune checkpoint inhibitors (the PDL-1 signaling pathway) has yielded results beyond anyone’s expectations. We have begun seeing individuals who with no further recourse after having the full armamentarium of previous therapies fail to resolve their disease, have their own immune systems re-enter the fight, and many are in durable remissions after their clinical trial experience. The FDA has fast-tracked several of these new therapies, and a new world of possibilities has opened. I cannot express fully in words the profound impact that this work has had on my daily experiences at OCF. You see, much of my days are spent talking to patients and their families. Every week within the many that I talk to about workarounds for treatment-related problems, or sorting through decision-making possibilities, there are those that have been told that all treatment options have been exhausted. Many reach out to OCF and then to me directly for guidance, for the “Hail Mary” idea. I would have to say that these conversations over the last decade have been the hardest part of what I do for OCF. But as we started helping to fill the PDL-1 clinical trials, my world began to change. Hope was now part of those conversations, and a few years later those friends made through emotion filled and often teary conversations on both ends of the phone, are still here to talk with me. While many think that progress against cancers occurs at glacial speeds, and I would for the most part agree with them, the world is changing. I have been privileged to be part of that change through my position on the National Cancer Institute Oversight Committee on Immunotherapy in Head and Neck Cancer, and through my more patient direct work at OCF. Hope changes everything. Tangible results convert hope to a new future. With help from our supporters in 2019-2020, the foundation will be continuing to build on that future.
Approaching my 21st year into OCF, the number of accolades and awards the foundation, and I for the foundation, have received is impressive. That with so little funding we have accomplished so much surprises many; but what we lack in financial and human resources we make up for in innovative, cost-effective approaches to accomplishing our goals. There are many that I am proud of, but along with awards from powerful entities like the National Institutes of Health /NIDCR, the one that I hold dear was from 2009 when OCF was chosen the best small cancer non-profit –regardless of cancer type – in the US by the Great Non-Profits organization. We have remained in the top rated list every year since. For those reading this who are unfamiliar with OCF’s growth and impact, a list of some of the more important of our accomplishments can be found on this web page Awards & Accolades . I jokingly call it our “brag page” as I am loath to talk much about these things, but realize that if we cannot show potential supporters and donors that we have tangible metrics that demonstrate our worthiness, they will not donate and we will not grow. We will miss capitalizing on opportunities to make vital inroads against the disease through improved treatments, advocating for change that which we know needs to be addressed, supporting patients, funding research that has immediate application- particularly in the area of early discovery, and continuing to build access to the information that enables those newly diagnosed to better understand their disease and potential pathways to a future where the word survivor is a badge of honor they will wear.
With over two decades of accomplishments fighting this disease and helping patients, OCF has made measurable progress. However, oral cancer’s impact is still significant – and we are not an organization that rests on the laurels of its past. The momentum and inertia of those endeavors has yielded a foundation that is each year more capable, more responsive to opportunities, and more innovative in how we capitalize on them. Today the future is brighter in the world of treatment options, our understanding from HPV to early discovery opportunities in the world of molecular, proteomic and genomic markers is moving in a direction that has potential to improve staging at time of discovery, the foundation’s ability to disseminate information and aid patients and their families with actionable information has never been better. Most importantly, OCF has never been more effectively engaged and directly connected to the issues and individuals that are the prime movers in it all as we are today. 2021 promises to be our most productive year ever, and important new initiatives in tobacco avoidance/cessation, public self-discovery and self-referral, and research – particularly in immunotherapy, as all as a section dedicated to those on PEG dependent feeding tubes and creating nutritionally sound blends at home vs living on pharma company formulas, are in our pipeline ready to be launched and added to our existing initiatives that are showing positive returns. Additional relationships with key professional groups and other stakeholders have been nurtured and are in place, ready to become strategic partnerships. Now I am asking for your help to turn these opportunities into progress and positive outcomes. Nothing we have accomplished to date, and nothing we attack in the future, happens without the personal commitment of thousands of private individuals that have come to believe in OCF and who share our values. People whose desire to effect positive change make our actions possible, and whose continued fidelity to the oral cancer cause and to OCF though repeat donations, is what will change the future. The component that makes any of it possible is you. In this month when we think of giving, but more importantly thought the year, I hope you will choose OCF as an entity worthy of your donations, and your vehicle to accomplish our shared goals – the end of oral and head and neck cancer’s enormous impact.
Thank you for taking the time to read such a lengthy discourse. I’m sure a PR firm could have written something more concise, but that is not how we spend our donors money. I hope you found it of value. Brian Hill
On average, 85% of all donations received goes directly into OCF’s mission-related projects annually.