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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

1

General Member of the Public

Rating: 5

In 2006 at age 50, my life was a freight train; roaring forward, very fulfilling & busy. I was 50, felt like I was 30, worked like I was 20. Then, my freight-train life ran head-long into a brick wall.

The "toothache" I'd sought treatment for was stage IV cancer in my jaw. Aggressive, very poor prognosis, and treatment, if successful, would be life-changing. Disfiguring, horrible suffering during treatment, with only slim chances of survival for more than a year or two afterwards.

I've always been a cautious optimist, but there seemed to be very little to be optimistic about. Very low survival rates, horrific treatment modalities, nothing about it sounded in any way appealing. Did I really want to go through that? Was there any POINT in going through that if all that would happen is a short extention of my life, filled with even more misery? I knew next to nothing about oral cancer, and I was terrified.

I knew I had to get to know my adversary, intimately, if I was going to fight. It didn't take long before I stumbled across what would become an integral, important, engaging source of understanding, advice & enormous compassion & encourgement; the Oral Cancer Foundation.

From the first moments, I became part of the OCF "family", and they became a part of mine. Within hours, I was talking to people about my deepest fears and feelings; total strangers earlier, and now close confidants.

It's been said that the only person who TRULY understands what a cancer patient goes through is another cancer patient. Even more important, if that other cancer patient suffers(ed) from the same type of cancer.

The OCF gave me the most important part of the "survival equation", and the part that was missing; the OCF gave me HOPE. I learned and came to appreciate that even with the odds stacked very much against me, many others had travelled that same road, and come out the other side, intact and able to live life.

The year that followed was horrific. Surgery...17 hours worth...a heart attack, a coma for two weeks. Radiotherapy, chemotherapy for months. sicker than I'd ever been in my entire life. Then physiotherapy, speech therapy, scans, tests, ad nauseum. Through it all, my "family" with the OCF was there for me every step of the way. Offering suggestions, encouragement, empathy. Strategies on overcoming some of the difficulties I had. There too, when one of our "family" lost their battle. We grieved together, we celebrated together...we were, and are "family". Some of my closest friends in the world are people I've met through OCF.

The Oral Cancer Foundation is a modest group of people helping one another deal with a common enemy. Together immeasurably stronger than each person indivudually. Their good work continues, and the demands increase, year after year. This organization has participated and played a hugely significant role in improving the survival rates for Oral Cancer around the world. I can think of no more worthy a cause than this.

JaneP

General Member of the Public

Rating: 5

My husband was diagnosed 3 times, with different oral cancers, first in 2002, another a couple years later, and a cancer on his lip in 2005. They were all undifferentiated, and contained, so he never had radiation or chemo, but instead, extensive surgeries removing a few teeth, jaw shaving, tissue, and some lymph nodes (that were not cancerous). He has had good check-ups since then. I am writing because he asked me to. The Oral Cancer Foundation and its forum were a God-send, with some of the most helpful, kind people you could ever hope for. It made a world of difference to talk to people who had experience with this disease, who could offer advice and comfort at a time when it was badly needed. I wish I could give the foundation more than 5 stars, because they truly have helped more people thru probably the worst times of their lives.

Previous Stories
2

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.

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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.

3

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.

2 Ken_29

General Member of the Public

Rating: 5

I found the ocf site soon after I was diagnosed I learned more in the next couple days than my doctors told me over the following weeks I had answers to my own questions and doctors agreed when asked remarkable site with incredible angels waiting to help you with your struggles even when they are going through there own, I still visit ( lurk) to learn new treatments and keep informed thank you ocf

General Member of the Public

Rating: 5

When my mom was diagnosed this site really helped me too become a patient advocate. Members here encouraged me to push for further treatment options for my mom. I am thankful for this wonderful group!!

2

General Member of the Public

Rating: 5

When I was diagnosed with oral cancer in February 2013 this site provided valuable support and advice. It is a place you can turn to with any question knowing that you will not be judged or your fears belittled. People are friendly and kind and will do there utmost to help and encourage you. Although the site is based in the USA people from all over the world can access the resources and help provided by the site.

2 Dave52

General Member of the Public

Rating: 5

This forum is packed with an amazing amount of information and most importantly an incredible group of support members, who have all lived through it or been a caregiver. I found it at a very scary time, and it helped me get through it.

4 Norma J.

General Member of the Public

Rating: 5

When my sister was diagnosed with oral cancer she found it very difficult to share her problems and concerns with her family or friends as she felt they did not understand what she was truly going thru. She turned to the oral cancer foundation for understanding and support. She was able to share her fears, learn how to manage her treatment, and speak honestly and openly with what went from complete strangers to true friends. No other organization gave her the sense of self that this organization did. No one else shared their personal history like the members of this organization did. She was never alone as long as she had access to her computer. I could never thank this organization enough for what they gave her.

2

General Member of the Public

Rating: 5

Oral cancer brings with it a host of problems, such as swallowing difficulties, learning to use stomach pegs for the first time, losing one's sense of taste - not to mention the side-effects of either chemo or radiation.
The Oral Cancer team were there for me throughout the journey. Having access to expert opinion and to others who had travelled down the same road made all the difference.

Previous Stories
1

General Member of the Public

Rating: 5

Facing the possibility of having my bottom teeth removed following cancer of the tongue, I decided to try and find information about whether or not this was a good idea on the web. This is when I discovered The Oral Cancer Foundation. After posting the enquiry, I soon heard from Brian Hill (the founder) and Gary Allsebrook (a long standing member). They both offered excellent information, for which I am extremely grateful. Had I simply gone ahead without their advice, I could have ultimately lost my jaw bone. I cannot thank them enough for their comments. The Oral Cancer Foundation also provides an invaluable forum for people all over the world to be able to communicate with and learn from others who are undergoing similar experiences, or who have walked the same road. My only regret is that I did not find them earlier, as in so doing avoided what was a very lonely road.

2 Pam_40

General Member of the Public

Rating: 5

My son was diagnosed with oral cancer at the age of 27. We were devistated and knew nothing about the disease. He searched and found The Oral Cancer Foundation. All the volunteers and survivors and care givers helped my son as he went thru this horrible time. They helped him cope and told him what to expect and what questions he needed to ask his providers. They literally became his family. He passed away last July but he was trying to raise awareness and told everyone he could about the OCF. He wanted to help others as the people involved with OCF helped him. He was a amazing man and would have helped others if he had survived. We will always be grateful to this group of people that give so much to others dealing with this disease.

2

General Member of the Public

Rating: 5

When my partner was fighting oral cancer, the support and advice I got was incredible. I had friends to turn to for advice, ideas, and somewhere where as a caregiver I could have a rant and not be judged. Thanks for your support and the tireless work you all do to bring oral cancer to the forefront. From accross the pond I support all you do.