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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

95 Stories from Volunteers, Donors & Supporters

Don_15

Client Served

Rating: 5

oral cancer survivor now one year NED. OCF is an incredible resource for gathering real first hand experiences of those who are under treatment and those who have completed treatment. Other resources are invaluable to get up to speed on this cancer and educating those preparing for the difficult journey ahead.

Previous Stories

Client Served

Rating: 5

Forum is filled with great amount of real first hand cancer experience. Best place to ask and get direct and honest answers and guidance thorough diagnosis, treatment, and post-treatment issues.

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4 Cindy79

General Member of the Public

Rating: 5

I think I speak for many people when I say that without OCF and the hard work of Brian Hill, Christine Brader, and Eric Statler there are a lot of us who wouldn't even be here, myself one of them.
This site is an invaluable educational and supportive tool for those newly diagnosed, treating and surviving all types and stages of Oral Cancer. This site not only provides information, it helps spread awareness and brings to the public just what a disfiguring and life altering cancer this is.
It also helps with those in a supportive role caring for victims of this cruel disease.

2 JaneP

General Member of the Public

Rating: 5

The OCF is a vital connection for people who find themselves with the numbing news of having oral cancer. It is a lifeline to offer hope, advice, empathy, friends, and to answer the infinite questions, repeatedly, to those diagnosed. There have been invaluable friendships formed among people who have lived through the treatments together and have shared their experience with newcomers. There are truly some "angels" in the forum who have guided the members for years, putting in more time than a full time job, to assist folks through the process of getting to "the new normal". OCF is a Godsend.

Previous Stories
23

General Member of the Public

Rating: 5

If you want a forum which offers personal experience, empathy, advice, Care (with a capital C), kindness, and even the BEST recipes for recovering O.C. patients, The Oral Cancer Foundation is the place to be. These folks truly become family (sometimes even MORE understanding than family). We work together to combat this disease. Thank you Brian and Gary!

1 Georgiana H.

General Member of the Public

Rating: 5

I cannot say enough about the Oral Cancer Foundation and what it has meant to me as a survivor. I check into the survivor/patient forum every day. The medical information is easy to understand and the people who participate are some of the most amazing people I have ever met. It has helped me to realize that I am not alone. There are no support groups for oral cancer in my area, and this is one way for me to share my feelings and find out that others are going through the same thing. My only regret is that I did not discover this site until after I had completed my treatments.

2

General Member of the Public

Rating: 5

As my wife goes through her struggle with tongue cancer, the OCF website and the community of people on their forums were of great help preparing us to what was ahead in our quest to become cancer free. Unlike other websites & forums, the information presented was always top quality with the administrators and founders of the organisation going above and beyond to ensure that the views expressed were not skewed but based on scientific evidence.

2

General Member of the Public

Rating: 5

This has to be the best site on the web for information and support for oral cancer sufferers and survivors alike. Members here share everything from recipes and soft food lists to uncommon symptoms your dr. Never told you about. Experienced members give advice and kudos, and support where needed.

1

General Member of the Public

Rating: 5

I was diagnosed with stage IV tongue cancer in May of 2009. Unfotunately I didn't know about OCF at that time. However, during my recovery, I log on to OCF at least once a day. I always learn something. Oral cancer is one cancer where the side effects of radiation, especially don't stop. I find it so helpful to know that I'm not alone. I also participate in a Facebook page for head and neck cancer survivors, which is fine, too, but it can't compare to OCF. They screen comments and are careful not to have anything posted that isn't medically sound. I am so grateful for the support and knowledge that I have received from OCF.

2 Eian E.

General Member of the Public

Rating: 5

My name is Eian Evans. I'm 28 years old and I found out I had salivary gland May.2012. I really didnt understand where to begin to look for information about my rare cancer. I have been through 2 major surgeries on my left side and one round of radiation. This website has helped me in many ways, it gave me a place to vent when nobody could relate to me. It gave me a place of comfort as well. I just had surgery on November.5th,2012. I pray and wish everyone the best in their journey of life. We are strong individuals, we are fighters.

33

General Member of the Public

Rating: 5

This helped my friend a great deal. Her husband was greatly helped by this organization. I highly recommend it to anybody.

28

General Member of the Public

Rating: 5

My brother-in-law and a great-niece both had cancer in thier mouths. They have both passed away, but while they were alive, the OCF helped, and has been a great comfort to my niece.

1

General Member of the Public

Rating: 5

I work in biological research and have always viewed cancer or any other disease a problem to be solved objectively. Frankly, for that very reason I have never really cared for the toll it takes on people affected or their friends and families. I believed that there was not much I could contribute unless I was part of the solution. Until of course one of your own falls prey. My friend had oral cancer 2 years ago. He has done well since then. But I was privy to empathy that I wasn't sure I had before. The OCF was a huge factor in his successful fight. I am grateful and would like to contribute in other ways than I previously thought possible. Thank you.

1

General Member of the Public

Rating: 5

This is a great website that has helped many people spread the word about oral cancer, its causes and treatment. My friend has oral cancer and this disease has irrevocably changed her life. Her doctor told her it used to be known as the "alcoholics cancer" seeing as big risk factors include smoking and drinking, but she tell me that there are so many young, non smokers posting on the forum that it gets very difficult to watch. The well established connection of this cancer to a certain strain of HPV is finally getting known in the health care community.

1

General Member of the Public

Rating: 5

My friend Donna from Canada had tongue cancer. She looks good today but she has been through hell and back. Sometimes she gets very close to the people she meets there and then it is very hard for her when their cancer comes back. I help her through those times. We have been good friends for years. Although we are separated by miles we are together in friendship.

1

General Member of the Public

Rating: 5

I am in the medical field, and I have professionally, and personally dealt with this cancer. I lost a friend Minnie Ashworth leaving behind children, and grandchildren who loved who deeply, and dearly!!!! She fought a courageous fight, but lost her battle. But with this foundation, I believe that she had a great chance with their help, and support. I also had a patient with tongue cancer that is alive, and well. So this Foundation is not in vain!!!!

16

General Member of the Public

Rating: 5

my mom had oral cancer and i know that her being able to talk to some of the people on here helped her get through a lot of it .

1

General Member of the Public

Rating: 5

I am a caregiver. My wife Donna is a two time oral cancer survivor. She first had cancer in 2004 and then again in 2007. This has been a very rough time for us, but I know she spends alot of time on the Oral Cancer board and I know there are times when she has been helped alot by other people who have the same disease. So far I have not needed to go there to find out what other helpers are doing because our medical system provides alot of support.

13

General Member of the Public

Rating: 5

This organization really helped out my friends in their time of need and I am thankful for that. They are also very thankful and have only good things to say about it.

1

General Member of the Public

Rating: 5

My niece, a non-smoker, developed oral cancer in 2005. No one in our family ever had this disease so we could not offer her much advice or guidance. Fortunately she found the OCF website and forum to help her get outstanding advice and guidance. This really helped her deal with her disease and ask informed questions of her doctors.

1

General Member of the Public

Rating: 5

OCF was such a great help to my daughter. She would set for hours talking to friends she had made thru this org. I know that this was a great help to her

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.