Oral Cancer Foundation

Changing patient’s lives today, altering outcomes in the future.

aka OCF   |   Newport Beach, CA   |  www.oralcancerfoundation.org

Mission

The Oral Cancer Foundation's missions are rooted in science. OCF funds life-saving research and work that elucidates mechanisms for early discovery and furthers disease understanding. We provide direct peer to peer support for oral cancer patients and their caregivers. We disseminate vetted professional and public information on oral and oropharyngeal cancer, and work as advocates for national policies that facilitate disease awareness, early discovery, and improve treatments and their outcomes. Our foundation's missions are changing patient's lives today, and altering outcomes in the future.

Our core mission is to reduce the incidence of oral and oropharyngeal cancers in the US population, and support those who are currently or have been, impacted by the disease. We do so through the following mechanisms.

We provide the most current and vetted scientific information about the disease in a central location, the OCF web site which has hundreds of pages of regularly reviewed pages on the disease, treatments, research, and much more. This information can be accessed free of charge by anyone, and our site is regularly used by patients, students, doctors, researchers, and the general public interested in the disease. An informed public is able to avoid risk factors for disease development, and recognize early signs and symptoms that will facilitate early diagnosis and treatment.

The foundation is the home of the world's largest patient support group for this disease. Located online, it currently has about 11,000 registered members (2016). Carefully monitored for content and appropriateness of the information exchanged, it is an environment which is free to those who use it, and also allows them to interact with each other and the professionals that monitor it in an anonymous manner.

OCF is a direct funder of research efforts related to oral and oropharyngeal cancers in the US. We specifically underwrite and co-contribute with the NCI and others to work that has implications in early discovery. Typical sciences funded have been, salivary diagnostics and tissue auto fluorescence as early screening tools, as well as a great deal of work in understanding the HPV virus which is driving the rapid acceleration in the incidence of oropharyngeal cancers today. We are also now funders of immunotherapeutic treatment research, which is changing the core means by which we think of fighting all cancers.

We are an advocate for oral cancer related issues in many arenas, including federal agencies such as the NIH/National Cancer Institute, the CDC and the FDA. We have worked directly with political figures in the Senate to advance the control of tobacco via the FDA, a primary cause of our disease. We have argued and advanced the vaccination issue with the CDC to allow young males to be vaccinated with the HPV vaccine, which was previously only available to young females, protecting them from future oropharyngeal cancers caused by this virus.

Ruling year info

2002

Principal Officer

Mr. Brian Hill

Main address

3419 Via Lido #205

Newport Beach, CA 92663 USA

Show more contact info

EIN

33-0969026

NTEE code info

Cancer (G30)

Alliance/Advocacy Organizations (E01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The increasing incidence of oral and oropharyngeal cancers has occurred every year for the last two decades. Almost 85% of all these cancers come from two primary sources, tobacco use and the HPV16 virus, the balance come from unknown etiologies. While the increase is the bad news, the good news is there are known targets readily available to reduce the incidence; and for each there are solutions in place. (Tobacco cessation and education efforts to reduce the remaining 18-20% of the population that uses tobacco, and HPV vaccination of our youth to stem the infection rate of this virus). OCF has programs that address both these issues in place and only a lack of funding prevents us from expanding those successful programs and becoming engaged with more strategic partners to finally stop the annual increase in incidence or our cancer.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

General

OCF provides the world's largest and most trafficked informational and support web site (over 25 million hits per month and approaching 3000 pages) on oral cancer. OCF operates the world's largest real time oral cancer patient to survivor support forum free of charge on the foundation's web site. We provide free public screenings in areas where disparities in health care exist with partners like USC and NYU. OCF lobbies professional organizations to provide early detection screenings to their patient populations. We cooperate with governmental organizations to provide needed services and information to patients. We financially co-sponsor research into early detection methods such as salivary diagnostics, and tissue fluorescence. We also co-fund research into the relationship between the HPV16 virus and the new sub population of patients that comes to the disease through this etiology. We provide speakers at university programs to upgrade students and existing doctors knowledge on the current change in the demographics of who is getting this disease, the mechanisms of early discovery, and proper screening techniques.

Population(s) Served
Adults

One of our major areas of focus continues to be on HPV related oral and oropharyngeal cancer research, particularly mechanisms for early detection. We have funded much peer-reviewed science in the last decade, but there is still so much we do not know about the virus. With HPV related oral cancer, the symptomology a patient might notice, or which can be picked up during a visual/tactile screening, is limited. The vast majority of HPV etiology disease does not produce lesions, tissue discolorations, or other signs in the mouth. Current technology platforms do not yet offer any means to reliably detect early stage disease. OCF is continuing to work with leading researchers to validate a mechanism for early discovery.

Population(s) Served
Adults

We are currently working on a public awareness project to educate the American population about the early signs and symptoms of oral cancer, enabling self-discovery. The death rate from oral cancer is very high; about 43% of those diagnosed will not survive more than five years. In the early signs of oral cancer’s development, it is often painless, and the physical signs may not be obvious. This makes it a very dangerous disease. Regular screenings by a qualified medical or dental professional, combined with a person’s understanding of the warning signs and symptoms, will allow its discovery in the earliest stages, when cure and survival are most likely. While an annual screening for oral cancer is important, they are still not commonly done. It is possible that a person will notice a change in their mouth or throat that needs examination between annual screenings.   Once knowledgeable, a person will be able to recognize what previously may have seemed like a minor symptom they might have ignored, and take the next step to get it evaluated by a medical professional. Recognizing these simple red flag symptoms is paramount.

Population(s) Served
Adults

In the world of cancer, one of the most impactful things that can take place is the earliest possible discovery that a cancer or precancerous condition is present. Early discovery yields less morbid treatments, and the early staging of the disease that occurs as a result, often improves long-term outcomes. Today in America, oral cancers are found as late stage disease in the majority of cases, and the opportunity of early discovery is not being capitalized on.

With more than 60% of the American population seeing a dental professional each year (ADA data), and virtually all of them receiving training on oral cancer during their education, we should be able to improve this situation. There are many things that must change to reduce the impact of this disease, but few are as important as early discovery of suspicious tissues, and unusual signs and symptoms. We believe that as our partners in this quest to "Be Part of the Change®”, RDH’s will become the leading edge of early discovery, and the paradigm of late stage finding of oral cancers with its inherent negative consequences for the patient, will be changed.

In addition, we are working on a self-discovery campaign that they hygiene community has partnered with us, involving disposable dental mirrors, to get the word out to the public. Once America’s knowledge of the disease itself and their learning the early warning signs, they should be looking for abnormalities their own. In other cancers, such as breast, self-discovery by women doing their own breast exams has greatly improved the discovery of early stage problems.

Our goals are to make sure the dental hygiene community as a whole is up to date on current oral cancer risk factors, signs and symptoms, and screening protocols. Because of the connection to the HPV virus, there are more things to look for, more questions to ask the patient and more ways to screen than when the only risk factor was tobacco and alcohol. Additionally, through their education, they will spread the awareness to their patients by giving them a guided tour of their mouth with the disposable dental mirror so the patient will see what their healthy mouth looks like. Thy hygienist will send their patients home with that dental mirror so the patient can check their mouth weekly or monthly so if something unusual appears and does not go away after about 2 weeks, they will know to come back in and have it further evaluated.

Along with the community of dental hygiene professionals, we are developing strategic partnerships with for-profit product manufacturers in this industry. These involve not just the obvious companies in the adjunct screening device marketplace, but with other firms whose products are used by hygienists daily. OCF can not do any of this alone, and we are proud not just of our professional partners, but the strategic relationships that we are developing with corporate partners that share our aspirations to bring this disease down as well.

Population(s) Served
Adults

The foundation is a big believer that in order to solve problems, that you have to become engaged where the problems live. The western/rodeo environment in the US has had a long-term relationship with tobacco, and until 2009 The Professional Rodeo Cowboys Association and the rodeos that they sanctioned had a lengthy history of tobacco sponsorship money funding the sport. While that has ended at PRCA events, tobacco use, and smokeless/spit tobaccos still thrive in the sport.

OCF has begun a program to put alternative role models out in the world of rodeo cowboy athletes, with the intention of reaching young people before they make addictive choices that will harm them later in life. The foundation’s messaging is simple and straightforward message - "Be Smart. Don't Start."

In 2014 our first rodeo spokesperson joined OCF; Cody Kiser, a young, personable, up and coming bareback bronc rider. Cody and OCF founder Brian Hill began a program of doing interviews at rodeos or by phone after Cody’s competition in the arena with local print media. The message from Hill, an oral cancer survivor, and Cody, a rodeo cowboy that believed in rodeo as a family oriented event where tobacco wasn’t a contributing part of the mix, was simple. Tobacco eventually brings bad things into your life, and you can be a great competitor and cowboy/athlete without it. The foundation worked with photographers to not only capture the excitement of a wild 8 second ride on a horse that wants to put you on the ground, to showcasing the message and branding that Cody wears on his safety vest and shirts into the arena competition. The idea, particularly Cody’s compelling story of wanting to do good in the world while following his passion of traveling to rodeos to compete each weekend, was an immediate success. That human interest story, coupled with facts about tobacco and nicotine addiction, and the dire oral cancer element, was a story that resonated with people. Almost immediately it attracted national attention in venues like the largest print magazine in circulation in America; Parade, to front page stories in local newspapers like the The Idaho Press Tribune.

Given our early success in the rodeo community, OCF decided to expand our community outreach by adding a second rodeo competitor as a spokesperson. Carly Twisselman is a fierce competitor in the the barrel racing event. As a 7th generation member of a ranching family, she has been around horses her entire life, and has been competing since she was a child. OCF is very proud to have her as a spokesperson in our "Be Smart – Don't Start" program.

Now with two competitors riding exclusively for the Oral Cancer Foundation brand, we expect to have a larger presence in the rodeo world, and reach many more young people with our anti-tobacco message.

Population(s) Served
Adults

Each April, in honor of Oral Cancer Awareness Month, OCF partners with dental offices around the country to offer free public oral cancer screenings to communities across the U.S. 2017 marks the 17th year that The Oral Cancer Foundation has lead the effort to raise awareness of this disease and the need for an annual screening. More than 3,000 dental offices and institutions partnered with OCF this year to offer free screenings to the public in their offices

The foundation has learned that although we accomplish a great deal as an organization, we can do so much more through the formation of strategic relationships with those who share our values and goals. OCF is grateful to the thousands of private dental offices that make time on multiple days during the month of April to offer free screenings to members of the public in their local communities across the nation. Besides the screening itself, these offices provide valuable information to the public related to risk factors and early signs and symptoms. An informed public can engage in self-discovery, which has generated early stage finds in so many other cancers.

In addition to the 1,000’s of private dental offices who will join with OCF this April, a coalition of professional organizations, private sectors companies, and educational institutions have chosen to partner with us. The professional organizations include; The American Academy of Oral Medicine (AAOM), The American Academy of Periodontology (AAP), The American Dental Hygienists Association (ADHA), The American Association of Oral and Maxillofacial Surgeons (AAOMS), The Academy of General Dentistry (AGD), The American Academy of Oral & Maxillofacial Pathology (AAOMP), and The Canadian Dental Hygiene Association (CDHA). Our private sector corporate partners include Bristol-Myers Squibb, Henry Schein Dental, LED/VELscope, and Identafi. The university partners this year are NYU, Penn Dental Medicine, and Columbia University College of Dental Medicine.

Over the years we have screened for free, tens of thousands of Americans in an effort to reduce the high death rate associated with this disease.

Population(s) Served
Adults

Early discovery of pre-cancers and cancer itself is of great importance. Early stage discovery means lower treatment related morbidity to the patient, and better long-term outcomes and survival. With no national policy through medical or dental professionals that is currently engaged in screening for oral cancer at a meaningful level, it is important that private individuals engage in monthly self-exams themselves. These will allow them to discover changes in their oral environment that are suspect, and self-refer to a dental or medical professional for definitive diagnosis of what the abnormality is. Self examination on a routine basis has had huge success in other cancers such as breast and melanoma, and the oral cavity is an area that lends itself to easy examination. Our new national effort launched through a public education web site http://www.checkyourmouth.org teaches people how to do a proper self-exam, gives them examples of the types of things that are worthy of referral to a professional, and ideally contributes to more early stage finds and better outcomes for people who become cancer patients.

Population(s) Served
Adults

Where we work

Accreditations

Best of 2020 non profits award 2020

Awards

Cancer Fighter's Award for Best small non-profit 2009

Great NonProfits

Best of 2020 nonprofits award 2020

Great Non Profits

Affiliations & memberships

Great Non Profits 2020

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Reduce the incidence of oral and oropharyngeal cancers in America, and reduce the stage at which those that occur are found to reduce treatment related morbidity and ultimately increase survival. This can only be accomplished through increasing public awareness of the disease and the risk factors for it that can be avoided, as well as teaching private individuals on a national level a self-examination method that will aid in early discovery (our www.checkyourmouth.org program) . Combined with engaging both as a non-profit entity and through our dental and medical professional partners to increase monitoring and screening of the public for the early signs and symptoms of the disease, this is an obtainable goal with the right funding and resulting grow of our programs.

Develop strategic partnerships with medical/dental profesionals and other stakeholders to increase early discovery through education and screening.

Increase our engagement with the public to raise awareness of the disease, the risk factors that might bring them to it, and the early signs and symptoms of the disease starting in them. Many vehicles have to be employed to create an efficient and effective outreach effort. From utilizing the social media platforms which have become a primary mechanism for information dissemination today and in which we have a strong presence, to increasing the media involvement through good story telling and opportunities for them to do public good while fulfilling their goal of providing both educational and entertaining content; we have to increase exposure of our little-noticed disease.

Increasing our engagement with those of high visibility and celebrity whose voices have broader reach than our own to raise awareness and deliver our messages. We have had experience and success with celebrities as diverse as Blythe Danner, Gwyneth Paltrow, Michael Douglas, the mega-band Coldplay, and others.

Develop strategic partnerships with private sector pharma/medical/dental entities who share opportunities with us in the increase of public engagement.

Develop partnerships in those fighting against the things that initiate this disease process. This is as obvious as relationships with other tobacco cessation entities in the non-profit sector and government, to for-profit entities engaged in the development of anti-HPV vaccines, and governmental agencies engaged in seeing their uptake by the American public.

While OCF at some level is already engaged in these areas, with increased growth and funding we can amplify our current efforts and expand our relationships. We cannot get this done alone, and these proven strategies are all effective and are having impact. But they need to be taken to another level of engagement as the foundation grows in size, funding, and influence.

OCF has relationships with many of the allied strategic professional partners described already. Even at our small size, we have demonstrated our ability to capitalize on these relationships. We are fortunate to have strong internal support from science advisory board members and governance leaders that have additional resources available to us to bring to bear on this problem and increase these proven strategies. What is missing is funding to make that next leap possible. But we are strong in technological infrastructure to handle the next level of engagement, trained staff to implement these goals and new initiatives, and professional medical and dental communities of thousands who wish to partner with us in further endeavors. In the dental community which is the primary group of professionals that can impact early discovery, screening, and referral to medicine we have formal relationships with every professional organization within it. from general dentists at the AGD to specialists in organizations such as the American Academy of Oral Medicine, and all in between, they are allied with us in our efforts. This brings a deep bench lf talent and on the ground individuals to the problem, with the support of their specific professional societies. In April Oral Cancer Month, for years they have all signed on to help us and are called out individually in our press releases that month for their contributions.

We have allied the dental professions as our partners in a disease that is directly related to the patient environment that they already service. Both the dentist and RDH communities are responding to our call to become more engaged, and this is evidenced by not just their partnerships with us during Oral Cancer Awareness Month, but in every month of the year as screening for this cancer becomes commonplace in their daily life in practice. Our public events like our walk/run events around the country have doubled in number in just 3 years, and continues to expand. This community engagement is vital to raising awareness, and bringing more medical dental professionals into the ranks of OCF supporters and screeners.

We have added in the last year high visibility partners that have the potential to raise awareness in million like the band Coldplay.

We have become allied to several large pharma companies most notably Bristol-Myers Squibb in both research effort funding, and in patient advocacy efforts. More of these well-funded partners who have a benevolent component to their corporate structure are possible to develop.

Our public self-discovery effort is launching in earnest in 2018, and with several corporate strategic partners in place and a few more pending, the opportunity of this to increase early discovery the way it has in the breast cancer and skin cancer worlds, is enormous. "Check Your Mouth"™ will become the vehicle for self-monitoring and self-referral for the earliest possible abnormality finds that will ultimately save lives. Already aligned with us in this endevor are the American Dental Hygenists Association and the Canadian Dental Hygienist Association. With the tens of thousands of members that they bring to the equasion, each capable of spreading the idea of at home self exams beteween dental appointments, our outreach to the North American public will gain momentum rapidly.

We are the only non-profit represented by holding positions on the National Cancer Institute Oversite Committee on immunotherapy in Head and Neck Cancer, The National Institue of Craniofacial and Dental Research, oversite committee on long-term outcomes and are allied to the CDC on HPV vaccination issues. There are opportunities for us to engage in advocacy at greater levels if we are able to increase funding and the staffing that accompanies it. We are invited to be part of more task forces and work groups at government and professional society agencies than we can say yes to. That is a missed opportunity that we hope with additional funding we can capitalize on.

We rountinely have speakers at major institutions and professional society meetings disseminating the more current information about things as diverse as the HPV virus to immunotherapy in our disease. But we are asked to speak at many more that we cannot afford to attend nor pay to send a spokesperson to. This is an unmet opportunity and our funding is all that is holding us back.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve,

  • With whom is the organization sharing feedback?

    Our staff, Our board, Our funders, Our community partners,

  • What challenges does the organization face when collecting feedback?

    In any data or science endeavor information evidence that is self reported has inherent bias. ,

Financials

Oral Cancer Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Oral Cancer Foundation

Board of directors
as of 2/5/2021
SOURCE: Self-reported by organization
Board chair

Mr. Brian Hill

OCF

Term: 2002 - 2024

Maura Gillison

MD Anderson Cncer Center

A. Kerr

New York University College of Dentistry

Mark Lingen

The University of Chicago

David Wong

University of California at Los Angeles

Curtis Kabat

Kabat Entertainment Group

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 01/08/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data