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The Oral Cancer Foundation

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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 and to medical and dental professionals, 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 24 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, the relationship of the HPV virus to oropharyngeal cancers, and immunotherapy treatments for oral and oropharyngeal cancers.

Results: *WINNER OF THE CANCER FIGHTERS AWARD from GNP as the BEST SMALL CANCER NON-PROFIT in AMERICA* Oral Cancer Awareness Month – April Oral Cancer awareness in the American public is low. Approximately 49,750 people in the U.S. will be newly diagnosed with oral or oropharyngeal cancer this year. Dental professionals 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 are young, healthy, nonsmoking individuals due to the connection to the HPV virus. We cannot stop this very common virus from spreading; our only hope to save lives is with professional involvement and public awareness of the benefits of a preventative vaccine. 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 reducing the historically late 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. The foundation Screens tens of thousands of individuals each April, oral cancer awareness month through are partners in the medical and dental community

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. OCF's founder Brian Hill sits on two NIH oversite committees, one on Immunotherapy in head and neck cancer at the NCI, the other on Long-term outcomes or oral cancer treatment and the NIDCR. Through these positions, we not only stay abreast of the current thinking in treatments and are able to disseminate that to our followers and the public, but we are able to influence research directions as well.

Community Stories

97 Stories from Volunteers, Donors & Supporters

11

General Member of the Public

Rating: 5

My co-worker's brother died of oral cancer. When my son-in-law was diagnosed with base of tongue cancer, my daughter was a wreck. I wanted to shield her from the gruesome details my co-worker went through. My daughter then found OCF and learned a great deal. She was still on edge but became stronger as she learned more and more. My son-in-law did well and is cancer free now.

1

General Member of the Public

Rating: 5

A very dear friend of mine and her family received support and help through friendships and advocay and information from the OCF. As an OC victem, the foundation was very helpful to her and her children. i suppor this foundation 100%

1

General Member of the Public

Rating: 5

my friend's mom had oral cancer and the ocf was very helpful not only to her but to her entire family as they were dealing with the most difficult time in their lives

1

General Member of the Public

Rating: 5

My daughter was diagnosed with oral cancer a few years ago. The help and support of the other survivors and caregivers she meet on the OCF forum helped her get through the treatment. The information on the website on oral cancer is the most comprehensive around. The Oral Cancer Foundation is a wonderful organization.

1

General Member of the Public

Rating: 4

The OCF was very helpful when my cousin's daughter was diagnosed with oral cancer. Finding support and assistance at a difficult time can make the all the difference for the family and patient.

1

General Member of the Public

Rating: 5

My mother was diagnosed with tongue cancer 4 years ago. She was a non-smoker and otherwise very healthy. It was a shock to hear that she had cancer. The treatment was difficult, but fortunately she found the Oral Cancer Foundation website to help her through it. The information on the website is the best around, and the support she received from the forum was outstanding.

1

General Member of the Public

Rating: 5

The Oral Cancer Foundation helped someone very important to me survive oral cancer. OCF not only helped him survive, but provided much needed support and information.

1

General Member of the Public

Rating: 5

This organization is wonderful! My boss survived mouth cancer with the help of your organization; your organization made it possible for him to survive not only the disease, but the cure as well.

1

General Member of the Public

Rating: 5

My friend was diagnosed with tongue cancer; your organization allowed him to not just survive the cure, but function and be sane. THANK YOU!!!

1

General Member of the Public

Rating: 5

My wife was diagnosed with oral cancer at the age of 40. We knew nothing about oral cancer, it's treatment, or any of the side effects. We were lucky enough to find OCF shortly after she was diagnosed. It has been a valueble source of information for us.

1

General Member of the Public

Rating: 5

My father-in-law is a 4+ year oral cancer survivor and has told me many times how helpful the Oral Cancer Foundation was for him during and after his cancer. He has also become very active on the OCF forum helping others.

1

General Member of the Public

Rating: 5

My cousin's daughter had oral cancer and I know that the OCF was very helpful. She speaks highly of the all the services offered by OCF.

18

General Member of the Public

Rating: 5

This company helped out my friend's husband when he was diagnosed with Oral Cancer. Very helpful organization. Very Informative site.

1

General Member of the Public

Rating: 5

OCF has been a GODSEND to me and my family. When my father was diagnosed with Oral Cancer... the website and message boards that they provide was the only thing that got us through! I found an instant online family filled with support, guidance, and lots of help in answering questions. This was an extremely difficult time for us, and my OCF family took me under their wing, and made things so much easier. Without OCF, we would have been lost and alone!!!

2

General Member of the Public

Rating: 5

I have only recently become aware of The Oral Cancer Foundation's work through my friend Megan Cannon, however seeing all the work and her level of commitment to oral cancer awareness I have become more educated about oral cancer. The Oral Cancer Foundation has taught me so much more than I've ever learned in health class about prevention and awareness. I'm proud to be a supporter of The Oral Cancer Foundation.

1

General Member of the Public

Rating: 5

My cousin's daughter had oral cancer and I know that the OCF was very helpful to her. She really appreciates what they did for her and wants to help this organization as much as possible because of how they helped her during her daughter's ordeal.

1

General Member of the Public

Rating: 5

I had a friend whose daughter had oral cancer and OCF was a Godsend! Great people, doing great work! They really need more funding.

1

General Member of the Public

Rating: 5

When I found a tumor in my mouth, I made a doctor’s appointment, then went online. What I found was doom and gloom and made me think I should not renew magazine subscriptions or make plans for Christmas. When I finally found the Oral Cancer Foundation, it was like a breath of fresh air. In addition to finding a LOT of calming, factual information, I discovered the forum, where I could read about real-life experiences. I could breath again. As I began treatment, every question I posted was answered. What could have been a long, scary summer was instead a Grand Adventure as I went into each new procedure completely briefed as to what I could expect. As an example of the type of information provided on the forum, at one point I very casually mentioned a transitory change in my hearing. One member told me that the chemo I was receiving will cause a very small percentage of patients extreme hearing loss. I took this information to the medical oncologist at my next visit, and he immediately changed the drugs I was receiving. Without the help from the people I met on the Oral Cancer Foundation forum, I would now be deaf as a post. That is a very powerful and important source of information for oral cancer patients and their families! In the nearly eight years since I first logged on, the site has grown exponentially, providing up-to-date information and via the forum, emotional support as well. The people who work behind the scenes to make this happen are heros in every sense of the word. I, alone, benefitted by absolutely current and correct information, the support I received on the forum, and the wonderful friends I have made there with whom I will always share a common bond. When I consider how many, many other patients, family members and friends of patients have similarly made use of this fantastic resource, I realize how extremely valuable the Oral Cancer Foundation is.

1

General Member of the Public

Rating: 5

April 20, 2007 I was diagnosed with Oral Cancer. Epidermoid Carcinoma, located in my the bone of my upper palate. Horrible situation to have to go through alone and with no one around who had been through this. I knew I needed to seek help fast. I searched the web for sites that help and have information for those with Oral Cancer and there were none. Not even the American Society had much coverage on Oral Cancer. Not enough that satisfied me and what I needed to know about what I had to go through. The "cancer" language is new and different and professionals tend to speak faster than one can understand. It was maddening having to write down things and remember other things, that needed to be understood and/or answered. I wasn't going to make any moves until I knew all my options and was able to feel comfortable with the information I was received. Than one day I happened by Oral Cancer Foundation. I was elated. The website is amazing. My questions were answered not only personally by people who went through but by reading what was written as well. They were very helpful not in the sense of giving medical advice but advice that was necessary to move forward. The fear I had within was removed so that I may go on to the next step. I never felt alone and at times knew that I could help others. Oral Cancer Foundation's helped me communicate at a time that was very difficult to speak. God Bless this website.

1

General Member of the Public

Rating: 5

My Cousin has Oral Cancer, I think it is great how this organization is helping her and many others with this cancer... I like how they are trying to raise awareness too... I never knew about oral cancer before, now I understand a little bit more about it, and how it is important to have screenings, just like you would for other cancers...