For those of you who follow us, you understand that in many ways the Oral Cancer Foundation is a unique entity in the head and neck nonprofit world. We approach problems differently. We are more advocacy-oriented. We worked in tobacco control and harm reduction with Senator Kennedy introducing a bill that gave the FDA first-ever control over the industry, and we developed programs for keeping kids from starting tobacco use in rural America, using our own competitors and spokespeople in the rodeo world. We were engaged in the HPV issue from the earliest science discoveries about it and how it changed the nature of our cancer, to the vaccination for it, and then advocating and fighting at the CDC to allow boys to be vaccinated when others were not even talking about the opportunity. Of course everyone says they support research, but that is different than financially contributing to making it happen, something we are very proud to have done for many years. There are more examples, but clearly we don’t wait for someone else to have an idea on how to address things. We identify problems, conceptualize unique ways to approach them, and implement them. This is on top of all of our patient-centric support programs. OCF created the first online support group where tens of thousands of people have been helped with their treatment questions and needs for emotional support. They registered to be part of it years before there ever was a Facebook, and social media didn’t even exist. Even after survival, we work helping people whose treatments leave them on permanent PEG feeding tubes get the equipment they need for proper nutrition at no charge, to not just survive, but thrive. This list of efforts with tangible metrics behind them could be longer, but this is not about the past. It is about the future.
You might think that even when we engaged in these things, we were moving these issues by ourselves, alone… but you would be wrong. NONE of our many accomplishments would even have been possible were it not for the unwavering support of the community of individuals that have grown around us, believed in us, and who have supported us as donors, volunteers, screeners, survivors that come back to help others, and families that have lost someone dear and financially help us see that others might avoid the same painful loss. Even high visibility celebrities have helped pave our way with TV PSA commercials, concerts to financially benefit us, and their vast influence and reach. The dental and medical professionals that have been part of our efforts, have been researchers, treatment professionals, those engaged in early discovery through screening, and all who oversee us with their advice, guiding the science-based choices we have made, of what to attack and how to approach it. We are certainly not alone… though often because we are the visible, pointy end of the spear, people forget that it is all of us pulling together that makes the progress happen. Many of you reading this post are part of that family. So enough history. Where do we go from here?
More opportunities to impact the lives of patients exist, and we are disinclined to sit on our laurels of past accomplishments. But the world has changed around us. In a normal year, OCF is funded by many walk/run events around the country, supported by the generous help of volunteer organizers combined with the donors and sponsors that contribute and fundraise on our behalf at each event. While we get some small grants (less than 5% of our annual income) from pharma companies, private small business and individual donors have always been the economic engine that has allowed OCF to have a meaningful impact. In a COVID virus world, with social distancing and staying away from group gatherings the new reality, all those donations generating events for 2020 have been shuttered. After more than two decades of face to face events, we need to embrace this new reality. As you have seen, the world is now virtual. We do things privately, or online, or in ZOOM meetings, and this paradigm shift may be with us for longer than any of us knows. So we have an ask for all of you. PLEASE join us from your own neighborhoods in an OCF National Virtual Walk event in August. Most of you are out walking already, in the woods, on deserted streets, on your treadmills at home. We are asking you to do it now for a purpose. Help us with a small registration fee, get your family and friends and co-workers to join with you, form teams to build momentum in fundraising, help spread the idea, and compete with each other in miles walked and donation dollars brought in for a greater good. You can register for the walk on the Oral Cancer Foundation website at: https://donate.oralcancer.org/event/virtual
A normal OCF “in-person” walk event in one city can raise 50k in sponsorships, registrations, and supporter donations of registered walk/run participants. What happens when it becomes a national effort, with the potential participation that entails? Can we fund the next breakthrough ideas? If you want or need to know more, please read on.
You may not be aware that during the last two years, but particularly during the first 6 months of this year when the Virus dominated our lives 24-7, that cancer issues, including the funding of research, and much more have been financially cut back on both the federal level and even at pharma companies. The national focus changed. Even cancer patient treatments in some places have been postponed, as hospitals try to keep them separate from COVID patients. We want you to consider this. CANCER DID NOT TAKE A BREAK BECAUSE OF THE VIRUS. Two million Americans will newly find themselves in a battle for their lives this year alone. Sadly, about 600,000 of them will die from it this year. This is nothing new, and there is the issue. We are not shocked by these numbers any longer, but we should be. 600,000 deaths each year in America alone. Cancer has been humankind’s deadly companion since before recorded history. And any progress we have made against it, while hopeful, has been incremental. Because we have grown accustomed to its deadly toll, we have grown numb to these shocking numbers. It is still happening every day; and our cancer, it is one of very few that is actually getting worse each year in incidence, not better. But opportunities to change this still exist, and we must see that they are not compromised nor slowed down. We all know the terrible impact that the HPV virus has had on our cancer. It has been the driver of increasing numbers of head and neck cancers for decades. We now have a vaccine that will prevent HPV infections in the next generation, meaning that etiology portion of our cancer population will increasingly become smaller. As the reservoir of HPV virus in the population is reduced, so will its ability to be commonly transferred between sexual partners. BUT what about those that are too old to get the vaccine and who are already infected? One of the researchers that your walk donations will help fund is working on low toxicity, patient-specific vaccines for people who have a persistent HPV infection, one that will generate a T cell immune response before the patient even develops a pre-cancerous lesion. That is a game-changing idea. This research could actually be the key to seeing the incidence rate in HPV infections persisting and converting cells to cancer DECLINE. We would have the existing preventative vaccine opportunity AND an interventional therapy that could make HPV less of a player in the already infected population. This would ultimately lead to herd immunity, and population level protection. While we are interested in the oral, head and neck cancer world, the impact would not be limited to our HPV caused cancers. Isn’t this a worthy reason to join the walk all by itself?
The three largest sponsors and the three largest donor teams will be recognized in a national press release at the events end. The team captains and/or their designee will be interviewed for a segment on the OCF podcast Oral Cancer Answers, available on Apple iTunes and numerous podcast platforms online, which also has a national following.
So please, join us. Sign up, form a team, bring in your friends and family, your co-workers. Take a walk with meaning, and a bigger purpose. Help us aid those in the present, and change our disease in the future. We can do this together, ONE STEP AT A TIME. You can register for the walk on the Oral Cancer Foundation website at: https://donate.oralcancer.org/event/virtual
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