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Nonprofit Overview

Causes: Cancer, Health

Mission: The Oral Cancer Foundation is a non-profit 501c3 charity that works to provide information about this disease to the public, advocate for patients, and provide support services to them. OCF operates the world’s largest real time, patient-to-survivor interactive support service via the web, and the foundation’s main information web site, which contains thousands of pages of information, receives over 22 million hits per month. We are also sponsors of research, primarily in the area of detection mechanisms that facilitate the discovery of the disease at early stages when survival rates are the highest.

Results: *WINNER OF THE CANCER FIGHTERS AWARD FOR SMALL NON-PROFITS* Oral Cancer Awareness Month – April Oral Cancer awareness in the American public is low. Approximately 45,750 people in the U.S. will be newly diagnosed with oral cancer this year. Dentists are often the first line of defense against oral cancer, through the process of early discovery. While smoking and tobacco use are still major risk factors, the fastest growing segment of oral cancer patients is young, healthy, nonsmoking individuals due to the connection to the HPV virus. We cannot stop this virus from spreading; our only hope to save lives is with professional involvement and public awareness. This is your opportunity to get involved and give back to your community in hopes to raise oral cancer awareness and the need for early detection in order to save lives. Together, we have the opportunity to make a difference in the world of oral cancers. Please join us. Rodeo - Tobacco Outreach - "Be Smart. Don't Start.” Rodeo cowboy, Cody Kiser, and cowgirl, Carly Twisselman, have partnered with OCF to spread a simple message to the youth at rodeo competitions, “Be Smart. Don’t Start.” The foundation is a big believer that in order to solve problems, you have to become engaged where the problem lives. Kids look up to athletes, not just in rodeo, but major league baseball and elsewhere as “heroes” that they would aspire to be like. Unfortunately no hero is ever perfect. OCF has begun to program to put alternative role models out in the world of rodeo cowboys athletes, with the intention of reaching young people before they make addictive choices that will harm them later in life. With Cody and Carly’s support, we expect to have a larger presence in the rodeo world, and reach many more young people with our anti-tobacco message. Be Part of the Change: The RDH community is uniting to be part of the much needed change in early discovery of oral cancers. With their commitment to performing oral cancer screenings and being the first line of defense they have the opportunity to find cancer in its early stages. Early discovery and diagnosis, yields better long-term outcomes, and lower morbidity to those who undergo treatments. In addition to screening patients they see in their daily practice, we have partnered with hygienists across the county to build screening teams to perform free oral cancer screenings in their community. A combined effort between professional engagement and public awareness is essential in order to raise awareness of this silent killer and educate the public about the importance of an annual oral cancer screening.

Target demographics: While historically the majority of people are over the age of 40 at the time of discovery, oral cancer does occur in those under this age. It is also now confirmed that in a younger age group, including those who have never used tobacco products, have a cause which is HPV viral based. The human papilloma virus, particularly version 16, has now been shown to be sexually transmitted between partners, and is conclusively implicated in the increasing incidence of young non-smoking oral cancer patients.

Geographic areas served: USA

Programs: Research - Understanding the Implications of Human Papilloma Virus Infection - particularly HPV 16, which is now responsible for the fastest growing segment of the oral cancer population. For over a decade OCF has funded core science which has helped us understand this new etiology. Work that has elucidated demographics, transfer mechanisms, future trends of the infection, treatment response, adn more have been produced by our decade long collaboration with Dr. Maura Gillison and her team. Advocacy - OCF was a leader in the effort to expand the use of the HPV vaccine for cervical cancer to young boys, testifying at the CDC vaccine boards over three years. With strategic partnerships formed with other organizations such as the American Academy of Pediatrics, the foundation finally achieved this goal. At the NIH, we have advocated for clinical trials in the area of head and neck cancers that our science board deemed urgent. These have included research to determine if the HPV protective cervical cancer vaccines would work as well in other HPV cancers such as HPV16+ oropharyngeal cancer, which is the fastest growing segment of the oral cancer population.

Community Stories

95 Stories from Volunteers, Donors & Supporters

2 Maureen J.

Client Served

Rating: 5

This is a model non-profit organisation which helps oral cancer patients, survivors and caregivers throughout the United States and in the wider world. It has helped me through two occurrences of oral cancer and I hold the managers and moderators in the highest esteem. They give information but also the emotional support that is necessary for us when we go through this devastating disease.

Previous Stories
1

General Member of the Public

Rating: 5

I found the Oral Cancer Foundation in 2009 after major tongue surgery and returned there this year after a recurrence, another surgery and radiotherapy. My life would be a lot harder if I didn't have the Patient Forum to call on when times get tough. Other patients and dedicated volunteers give advice and support about all manner of treatments, especially radiotherapy which can be particularly dire when directed at the head and neck.

I'm impressed by the overall philosophy and tone of the site. The Forum is beautifully moderated and newcomers are welcomed with sympathy and ready answers to their questions.

It's also heartwarming to feel a link to oral cancer patients all over the world. No one wants to join the oral cancer community but if your life takes this path, the Oral Cancer Foundation makes it so much more bearable.

2

General Member of the Public

Rating: 5


The Oral Cancer Foundation has helped me and my family with my fathers tongue cancer. The online message board has been a huge help in answering our questions and helping us to get my father thru some very dark times. I cant thank the dedicated volunteers enough for all the help they have given us this year. Other charities should be more like The Oral Cancer Foundation. They are the best of the best!!!

2

General Member of the Public

Rating: 5

After being diagnosed with T4 tonsil cancer I discovered OCF website. Sharing experiences with others who are at different stages of the journey, from diagnoses onwards and everything that involves, has been a huge factor towards helping me deal with my own battle. Now that I am in remission and doing well, I want to give the same help and support that people, who use this site have given me. This forum is amazing and I cannot recommend it enough to all people whose life changes overnight by the C word and their families.

1

General Member of the Public

Rating: 5

My healthy and active husband (46) was diagnosed with Stage IVa throat cancer (SCC) on January 31, 2014. I am very thankful to have found the OCF website and its Patient Forum. The website has informative and thorough answers to my questions concerning my husband's diagnosis, treatment, and recovery. The OCF's Patient Forum contains advice and personal accounts which provide me with relief that my fear, worry, frustration and anger as his caregiver is normal and has been felt before by others. The contributing members graciously offer their experience and insight, sometimes humorous, but also sometimes heartbreaking. But knowing I am not alone at 3:30 am with a question about peg tube feeding, radiation burns, or cisplatin is of great comfort to this caregiver. Thank you OCF.

General Member of the Public

Rating: 5

This website has been so helpful to me. Diagnosed in April 2014 with squamous cell carcinoma on base of tongue, still in treatment awaiting radiation. So great to know you are not alone in facing this awful disease.

3

General Member of the Public

Rating: 5

The most amazing forum with very knowledgeable and supportive people. I wish I had found it earlier...

2

General Member of the Public

Rating: 5

This site was such a blessing after my treatments for stage 4 head and neck cancer, and continues to be a part of my life as a place to go to give and receive moral support, Love everyone on the forum and Brian Hill does a great job keeping us all up to date on developments in research and developments.

Previous Stories
1

Client Served

Rating: 5

My only regret is that I did not find the OCF website until several months after my treatments ended. The forum has been incredible for me, putting me in touch with many others who have gone through the same experiences and are dealing with the same after affects of treatment. The information available on the site and especially the forum helped me get through the toughest time of my life. I will always be grateful for this wonderful foundation.

General Member of the Public

Rating: 5

I found this site after my boyfriend was diagnosed with cancer. The site and the members have been extremely helpful over the past 3 months, both in the emotional support and the information about treatments. This is an awesome organization, and I feel so blessed that they are available for all of us struggling as patients, and caregivers!!

1 Barry C.

General Member of the Public

Rating: 5

I learned about this site from a web search 7years ago when I was first told about my oral cancer. For me it has been very helpful from there forum pages. If you have a question or a concern just type up your note and you will get replies back to help. It great to have a strong support system like this out there.

1

General Member of the Public

Rating: 5

Going through oral cancer a few years ago, I learned about OCF from my oncologist. Since then I've been a frequent visitor to the forums, read nearly all the educational material and become a regular donor. I can't say enough about the amazing support and expertise offered by both the Foundation itself and the wonderful people who comprise its members, volunteers and just plain Joe and Jane Public Citizens. I've been to many similar sites dealing with other personal medical issues. The Oral Cancer Foundation is the gold standard.