Oral Cancer Foundation

THE ORAL CANCER FOUNDATION IS A NATIONAL PUBLIC SERVICE, NON-PROFIT ENTITY DESIGNED TO REDUCE SUFFERING AND SAVE LIVES THROUGH PREVENTION, EDUCATION, RESEARCH, ADVOCACY, AND SUPPORT ACTIVITIES.

OCF 2021 990 NARRATIVE 2021 HAD ALL THE HOPES OF BEING NOT 2020, BUT IT WAS IN ACTUALITY A REPEAT FOR MANY SMALL PROFIT ENTITIES INCLUDING OCF. NATIONAL FOCUS FOR CHARITABLE GIVING DECREASED ACROSS THE BOARD, MANY QUALITY SMALL NONPROFITS, AND SMALL BUSINESSES CLOSED THEIR DOORS FOR GOOD ACCORDING TO THE JOURNAL OF PHILANTHROPY, AND OCF'S BASE OF DONORS DRAWN LARGELY FROM THE MIDDLE CLASS HAD LESS FREE INCOME FOR THINGS LIKE DONATIONS TO CHARITIES. ALL THIS IMPACTED US IN SIGNIFICANT WAYS. WHILE WE HAD SOME CASH RESERVES, WE HAD TO DIAL BACK MANY PROGRAMS, AND REDUCE STAFF. AS STATED IN 2020, A YEAR BEFORE THE PANDEMIC OCF HAD ALREADY ADOPTED A WORK FROM HOME MODEL, AND HAD REDUCED OVERHEAD COSTS BY ELIMINATING OFFICE SPACES. AGAIN IN 2021, ALL OF OUR FUNDRAISING AND AWARENESS EVENTS WHERE PEOPLE GATHERED IN PERSON HAD TO BE CANCELLED IN ACCORDANCE WITH CDC GUIDELINES. THOSE HISTORICALLY BRING IN 65% OF OUR OPERATING BUDGET. WRITING THIS IN 2022, WE SAW THINGS ABOUT THE SAME WITH LIMITED EVENTS, BUT WITH A VACCINE AND A MORE VACINATED POPULATION, WE ARE OPTIMISTIC ABOUT THE FUTURE, AND OUR ABILITY TO GET BACK TO AWARENESS EVENTS THAT HELP GENERATE VISABILITY AND DONATIONS TO THE FOUNDATION. CANCER HAS NOT GONE AWAY DURING THE COVID CRISIS. 2 MILLION AMERICANS STILL WERE DIAGNOSED WITH IT IN 2021 AND ABOUT 660,000 DIED FROM IT. THAT PART OF THE WORLD DID NOT CHANGE. THE DEMANDS FOR OUR SERVICES STAYED THE SAME AS IN THE PREVIOUS YEAR, BUT WE CONTINUED TO WORK LONGER HOURS WITH FEWER STAFF TO ADDRESS THE VOLUME OF PATIENT CENTRIC HELP REQUESTS THAT CAME IN. IN ESSENCE WE ARE STILL STANDING AND DOING GOOD IN THE WORLD EVEN WITH THE MANY NEGATIVES THAT 2021 PLACED ON US. THE FOUNDATIONS' PUBLIC OUTREACH AND DISSEMINATING ACTIONABLE INFORMATION MISSIONS STAYED STRONG. THIS WAS FACILITATED BY INCREASED VISIBILITY OF THE FOUNDATION THROUGH AN ORGANIC SPREAD OF OUR LARGE INTERNET PRESENCE. A MAJOR REBUILD OF OUR INTERNET PRESENCE WAS BEGUN IN THE LAST QUARTER OF 2014, BUT ANNUALLY WE HAVE ADDED OUR SATELLITE WEB SITES ON ORAL CANCER THAT ACCESS CURRENT AND ARCHIVED NEWS STORIES ABOUT OUR DISEASE, AND A SEPARATE EDUCATIONAL SITE FOR THE PUBLIC ON SELF-SCREENING TECHNIQUES FOR EARLY DISCOVERY AND SELF-REFERRAL OF SUSPECT TISSUES IN THEIR ORAL ENVIRONMENT TO NAME A COUPLE. THIS MOBILE FRIENDLY MOVE ACCELERATED PUBLIC ENGAGEMENT WITH THE DISEASE AND THE FOUNDATION. OCF CONTINUES TO HAVE FEW CORPORATE PHARMA SPONSORS, AND WE DID NOT HAVE THAT RESOURCE TO FALL BACK ON. THE FOUNDATION'S PUBLIC OUTREACH EFFORTS FOCUSED HEAVILY ON THE ROLE OF THE HPV VIRUS AS AN ORAL CANCER CAUSE, AND HOW COMMON INFECTION WITH IT IS IN THE US. OCF STAFF MEMBERS AND KEY OPINION/SCIENCE LEADERS ALLIED WITH OCF SPOKE VIRTUALLY AT NUMEROUS EVENTS ON HPV AND VACCINATION. WE HAVE CONTINUED LAST YEAR'S EFFORT TO INCREASE SPEAKING ENGAGEMENTS IN THE DENTAL COMMUNITY, AS THEY ARE BECOMING AN IMPORTANT PART OF THE EARLY DISCOVERY PARADIGM AND EDUCATION OF THE PUBLIC ON HPV EVEN IF THE PLATFORM TO DO SO HAS CHANGED. IN 2021 THESE IDEAS CONTINUED TO BE VIRTUAL VS. IN PERSON LECTURES AND MEETINGS. OUR VOLUNTEER RDH ADVISORY BOARD CONTINUES TO BE AN IMPORTANT PART OF ACCOMPLISHING THIS OUTREACH. THERE IS A GREAT DEAL OF MISINFORMATION ABOUT THE HPV VIRUS AND THE RELATIVE RISK THIS POSES TO AMERICANS. WE HAVE FOUND THAT OUR ALLIANCE WITH THE RDH COMMUNITY IS RICH IN OPPORTUNITIES TO COMMUNITICATE DIRECTLY WITH AMERICANS ABOUT THESE ISSUES. OCF HAS BEEN PARTNERED TO THE CDC AND THE 65 TOP CANCER TREATMENT CENTERS IN AMERICA TO PUT OUT A UNIFIED MESSAGE ABOUT HPV VACCINATION, AND WE HAVE DONE NUMEROUS WEB BLASTS RELATED TO CORRECT INFORMATION REGARDING MEANS OF TRANSMISSION OF THE VIRUS, AND THE VERY LOW CONVERSION RATE (1%) OF ORAL HPV INFECTIONS TO ACTUAL CANCERS LATER IN LIFE AND VACCINATION. METRICS OUTSIDE OF HITS ON THE WEB INFORMATION ARE HARD TO QUANTIFY, BUT WE BELIEVE THAT AN EFFORT MUST BE MADE TO COUNTER THE ANTI-VACCINE MOVEMENT AND TO BELAY THE UNNECESSARY FEAR THAT EXISTS IN PEOPLE WHO ARE GETTING INCORRECT INFORMATION, AND IS THE PRIMARY COUSE OF VACCINE HESITANCY. WE ARE AWARE THAT THIS MUST CONTINUE TO BE A MULTI-YEAR ONGOING DIRECT EXPENSE EFFORT. WE HAVE HAD ONE SMALL FINANCIAL PARTNER IN PROMOTING HPV VACCINATION, SO THE COSTS TO OUR BOTTOM LINE HAVE BECOME LESS OF AN ISSUE. SEARCH FOR ADDITIONAL PARTNERS CONTINUES. IN 2014 WE BEGAN SPONSORSHIP OF TWO RODEO COMPETITORS WHO RIDE AND COMPETE IN CLOTHING BEARING OCF'S ANTI-TOBACCO MESSAGING/BRAND, WHICH ACCELERATED TO MORE RODEOS IN 2019. WHILE THEY ARE NOT TASKED WITH CHANGING ADULT BEHAVIOR, THEIR ANTI-TOBACCO MESSAGE IS GEARED TOWARD YOUNG KIDS AT RODEOS WITH A MESSAGE OF "BE SMART. DON'T START." THEIR CONVERSATIONS WITH YOUNG PEOPLE AT THE RODEOS THEY ATTEND AFTER THEIR COMPETITIVE TIME IN THE ARENA, HAVE BEEN WELL RECEIVED AND THEY CONTINUE TO GET ATTENTION FOR THEIR EFFORTS IN LOCAL AREA MEDIA. BUT IN 2021 MOST RODEO EVENTS WERE CANCELLED ACROSS THE BOARD NATIONALLY BY THE CDC, AND THIS PROGRAM WAS PUT ON PAUSE UNTIL SUCH TIME AS WE CAN AGAIN CONGREGATE IN PERSON. HTTP://WWW.ORALCANCERFOUNDATION.ORG/SUPPORT-OCF/RODEO-TOBACCO-OUTREACH.PHP THE STORY OF A SMALL NON-PROFIT LIKE OCF BEING THE FIRST CHARITY TO EVER SPONSOR A RODEO COMPETITOR, AND THE MESSAGING FROM THESE TWO OCF ANTI- TOBACCO SPOKESPEOPLE CONTINUES TO BE PICKED UP BY MEDIA OUTLETS ACROSS THE US, BUT WITH A YEAR OUT OF VISABILITY THAT EXPOSURE HAS WANED. BOTH SPOKESPEOPLE HAVE GIVEN NUMEROUS INTERVIEWS BOTH TO NEWSPAPERS AND ON PUBLIC TV SHOWS, SUCH AS GOOD MORNING UTAH, AND GOOD MORNING RENO OVER THE YEARS. IN 2015 OCF PARTNERED OUR SUPPORTERS IN THE RDH COMMUNITY WITH OUR RODEO EFFORTS TO ENGAGE IN FREE PUBLIC SCREENINGS OF ATTENDEES AT RODEOS WHERE OUR RIDERS ARE APPEARING FOR EARLY SIGNS OF ORAL CANCERS. RECEPTION BY RODEO PROMOTERS, AND THE PROFESSIONAL RODEO COWBOYS ASSOCIATION THAT RUNS MOST EVENTS AROUND THE COUNTRY HAS BEEN VERY POSITIVE. WE ARE NOW ON PAUSE WITH THIS RODEO EFFORT AFTER SUCH A STELLAR RESPONSE TO IT, AND HOPE TO RETURN TO ALL THE ASPECTS OF THIS PROGRAM IN 2022. RURAL AMERICA AND THE RODEO CROWD, WHICH IS NOW VERY MUCH A FAMILY SPORT, IS ONE OF THE LAST STRONGHOLDS OF TOBACCO. WE ARE THE ONLY NON- PROFIT WE HAVE SEEN AT THESE EVENTS ENGAGED IN THAT COMMUNITY TO BRING DOWN THE IMPACT OF TOBACCO USE. IN 2016 AT THE HEIGHT OF ITS USE, THE FOUNDATION CONDUCTED A TOTAL OF 53 AWARENESS EVENTS IN MAJOR CITIES MANY OF WHICH OUR COORDINATORS CAME FROM THE RANKS OF THE RDH COMMUNITY AND FAMILIES IMPACTED BY THIS CANCER. TO HAVE THAT GO TO ZERO IN 2020 WAS UNEXPECTED AND FINANCIALLY DIFFICULT FOR THE FOUNDATION. WE ANTICIPATED THE CONTINUED IMPACT OF THIS IN 2021, BUT OPEN-AIR EVENTS LIKE OURS WERE NOT ABLE TO START UP AGAIN UNTIL THE FALL OF 2021. WE HAD TWO DONATION GENERATING EVENTS AT THE END OF THE YEAR PUT ON BY SURVIVOR FAMILIES IN THEIR COMMUNITY, AND ONE VIRTUAL WALK EVENT, WHICH WAS NOT REVENUE GENERATING, BUT THE MISSION TO RAISE AWARENESS NEEDS CONSTANT ATTENTION. IN 2021 OUR CONTRIBUTIONS TO HPV/ORAL-OROPHARYNGEAL CANCER RESEARCH WERE PAUSED, BUT WE REAFFIRMED OUR COMMITTMENTS TO LONG-TERM OCF AFFILIATED RESEARCHERS TO SUPPORT THEM AGAIN IN 2022. HOWEVER, IN 2021 WE SAW PUBLISHED THE OUTCOMES FROM PREVIOUS YEARS' RESEARCH FUNDING, IN PRESTIGIOUS PEER REVIEWED JOURNALS SUCH AS THE JOURNAL CELL, AND THE JOURNAL OF THE NATIONAL CANCER INSTITUTE. OCF SPONSORED RESEARCHERS ALSO SPOKE VIRTUALLY AT SEVERAL LARGE HEAD AND NECK CANCER CONFERENCES TO THEIR PEERS AND MEMBERS OF THE TREATMENT COMMUNITY DELIVERING DATA FROM THOSE NEWLY PUBLISHED WORKS, AND OCF CONTINUED TO WORK BEHIND THE SCENES TO SEE THEM GET THESE SPEAKING OPPORTUNITIES. 2021 ALSO SAW A LONG-TERM COMMITMENT WE HAVE HAD TO DR. MAURA GILLISON'S AT MDACC WORK IN THE IMMUNE CHECK POINT INHIBITOR RESEARCH EFFORT RESULT IN NEW PUBLICATIONS. PDL-1 DRUGS LOOKED AT IN THIS WORK ARE PROVING TO BE THE MOST IMPORTANT ADVANCEMENT IN CANCER TREATMENT ACROSS A WIDE VARIETY OF TUMOR TYPES IN MORE THAN 50 YEARS, AS THEY INVOLVE REMOVING CHECKPOINTS FROM THE PATIENT'S OWN IMMUNE SYSTEM ALLOWING IT TO BECOME MORE ENGAGED IN THE DESTRUCTION OF THE CANCER. WE HAVE ALSO SEEN PEER REVIEWED AND PUBLISHED A SECOND IMPORTANT ARTICLE WE CO-SPONSORED RELATED TO MOLECULAR AND GENOMIC MARKERS THAT NOW GIVES US IMPORTANT TARGETS FOR THERAPY DEVELOPMENT AND EARLY DISCOVERY OPPORTUNITIES. SO, WHILE DIALED BACK SOME, PROGRESS STILL EXISTED. IN THE ANNUAL APRIL, ORAL CANCER AWARENESS MONTH NATIONAL ACTIVITIES, OCF WAS ALIVE WITH A VIRTUAL EVENT, BUT WITH A LARGE NUMBER OF THE NATION'S DENTAL OFFICES CLOSED OR ON SHORT SCHEDULE FROM THE COVID ISSUES, OUR NATIONAL SCREENING INITIATIVES WITH PARTNERS FROM THAT COMMUNITY WERE NOT HELD AT PREVIOUS LEVELS. WITH OVER 2,500 SCREENING EVENTS NATIONALLY IN APRIL 2019, THE FOUNDATION'S PRIVATE PRACTICE DENTAL AND OTOLARYNGOLOGY PARTNERS CONDUCTED OVER 70,000 FREE ORAL CANCER SCREENINGS IN COMMUNITIES ACROSS THE COUNTRY. WE HAD STRONG STRATEGIC PARTNERS FOR