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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

42 Stories from Volunteers, Donors & Supporters

2 clroser

Client Served

Rating: 5

My husband was diagnosed in Dec 08 and we knew nothing about oral cancer. Thanks to OCF for always being there with answers and news and advice. OCF has been my "go to" spot for over 4 years.

Previous Stories
47

Volunteer

Rating: 5

I found the Oral Cancer Foundation about a week after my husband was diagnosed with oral cancer. Neither of us was familiar with this disease and our treatment center was an hour and a half away from our home. We had lots of questions and the good members of the forum on OCF and the wonderful educational pages made our journey easier. For patients and caregivers, family members and friends, this is a resource that is a must have!

1

Volunteer

Rating: 5

I love OCF. It is what has gotten me thru two round of oral cancer. The members are intelligent, caring and just plain amazing!!

1

Volunteer

Rating: 5

The Oral Cancer Foundation has helped to give my husband new meaning to his life. Since his bout with Oral Cancer he spends a great deal of time helping others that are going through treatment. I know that he greatly values the friendships he has developed with other members of the OCF.

1

Volunteer

Rating: 5

My name is Gerry.I am 51 and got Tongue Cancer in 2000. I have had multiple surgeries on my tongue w/ life altering consequences. I had a recurrence in 2007. OCFoundation has helped me tremendously. The site is a wealth of REAL facts. The news feed is A+. I check in with it weekly to stay updated on this rare cancer. The Drs could not possibly do this for me today. But most important, the support from the others who have endured this awful disease has been too valuable to detail here. One of my very best friends in life I met on this site. We have not met in person yet. But we met here about 4 years ago and the bond I share with her is one of the greatest gifts in my world. I am so thankful to the OCFoundation.

1

Volunteer

Rating: 5

I am mainly an in the background type person and I was a friendly caregiver to my boss who had a FT caregiver so I helped out when I was needed. Without this site I wouldn't have understood what my boss or his wife were going through so it was priceless when I needed it. I continue to visit from time to time and I just find the people amazing in their desire to help others that are about to go through their fight with oral cancer. Anyone who thinks or knows they have oral cancer would benefit greatly by logging on to this site.

1

Volunteer

Rating: 5

I found the OCF site 15 years after I was diagnosed and treated for squamous cell tongue cancer. My diagnosis had come as a complete surprise, as I had never smoked and had been told by multiple doctors that I was not at risk for oral cancer. Long after my experience with it, I was actually looking for good resources for a couple of friends who had been recently diagnosed, and was amazed at the amount of current, relevant information that OCF had to offer -- far beyond what I could find on other cancer-related sites. If anything like this had existed when I was undergoing treatment, it would have been an enormous help and support to me. As someone who went through major oral surgery and weeks of radiation without the benefit of OCF's support network, I can appreciate how much this site can provide to someone facing this disease.

1

Volunteer

Rating: 5

I joined the OCF Survivor Forum in November of 2002, well before my treatment started, and the members of the forum there, and also information on the main site, helped me in ways that are unmeasurable. I have made many friends in all areas of the world and stay in touch with many of them to this day. Back in November of 2002 there really weren't any other oral cancer sites like OCF and there still isn't today. I have been honored to give back on the forum, what was so freely given to me. It has been a life altering experience for sure. I am certain that advice that I received there has helped me to survive the horrors of cancer treatment and it's aftermath. I have 6 years of being cancer free today and OCF was a major part of that. Conversely, it saddens me that I have lost so many friends to this horrific disease.

1

Volunteer

Rating: 5

I found the Oral Cancer Foundation 2 years after my diagnosis. When I finally found the site it changed my life. Talking to people on the survivor/patient forum made me realize, not only are there thousands of people going through the same thing, it made me realize I could actually someone. I was lucky enough to actually meet some of the people in person and I feel blessed to have done so.

1

Volunteer

Rating: 5

As a two time SCC oral cancer survivor diagnosed in 1997 and 2001, I can tell you I know the fear of going this road alone as there were no support groups out there for this kind of cancer. I joined the OCF in May of 2001 and have been seen the help that this charity brings to both patients and caregivers and their families. It has even managed to save a few lives but stopping a caregiver from cutting pain patches or getting someone to the ER in time. Here are a group of compassionate, well informed people who have been down this road and are willing to help you on your journey. Besides the marvelous forum, there is a large resource section on the web site wityh information on oral cancers, its treatment, side effects, dental issues, best hospitals, etc. and two search engines to help you fins what you need. There are lasting cyber friendships formed on the forum and the emotional suppsort is beyond my words. I never knew how much my cancer had affected my husband until we flew to Vegas to meet twenty some other patients and caregivers. He came home knowing he wasn't alone in his fears abd feelings and a much calmer man. Meanwhile, the founder of this charity, is out beating the bushes at conferences and government agencies to get better funding for this cancer and to get the word out that 'EARLY DETECTION SAVES LIVES'. One of the best charities going.

2

Volunteer

Rating: 5

The second biggest help outside of my family, friends and co-workers was the Oral Cancer Foundation website and the Patient/Survivor message board contained within. The information contained on this site is squarely focused on Head and Neck Cancers. The message board is chock full of information, assistance and support, given by people who have gone through or were currently in treatments for this cancer or caregivers helping someone with cancer. Each person there has been touched by the effect of this grossly disgusting disease, from young to older adults, from all over the world.

49

Volunteer

Rating: 5

I live in rural Vermont. When I was first diagnosed with oral squamous cell carcinoma, I began searching the web looking for information and support. Fortunately for me, I found the Oral Cancer Foundation. I posted my situation on the patients/survivor forum and was moved to receive immediate caring responses and support. All of the responses advised me to go to a big city with a comprehensive cancer center for proper treatment. I followed this advice and it probably saved my life. The local hospital told me I had clean margins. The Mass Eye and Ear Infirmary's pathologists were convinced my margins were not clear and recommended radiation therapy, which I received. Throughout the process, I communicated regularly with other patients and survivors on the OCF's bulletin board. I was and remain extremely impressed at the compassion and support that is expressed there. Make no mistake, this is a terrible disease and victims of it truly suffer. However, the suffering, anxiety and dread are alleviated and mitigated by the wonderful community that has formed at this foundation. I now help to keep a section of the OCF website up to date. That is the oral cancer in the news section and I regularly try to post articles of interest to both the lay and professional readers of this web site. I feel like it is a small way to repay the debt I owe to this foundation.

1

Volunteer

Rating: 5

The Oral Cancer Foundation's website is full of information for oral cancer patients and their caregivers. Its founder, Brian Hill created a place where questions can be asked and support is shared. This is especially helpful to newly diagnosed patients who face fear and uncertainty. Its a very scary time and so many do not understand all the medical jargon and knowing which doctor does what. The Oral Cancer Foundation has saved my life. I found the site right after I was diagnosed with my first round of cancer. The forum members embraced me and helped me thru my treatments. They were there with me when I had my first recurrance less than a year later. The same warm, caring, knowledgable people are still there helping me now with my thrid round of cancer. I have met many of these special people in person and am proud to call them my friends. One story that shows how wonderful a site OCF is. A woman joined and said she did about 10 or her radiation treatments and couldnt continue due to the severe side effects. This woman had several young children that depend on her. Jointly thru encouragment and examples we got her to return to her treatments. She was so touched by all the responses and kindness of strangers she went back to finish her radiation.

2

Volunteer

Rating: 5

The Oral Cancer Foundation is saving lives and the founder, Brian Hill, is one of the most hard working and selfless people I know. I have witnessed Brian tirelessly guide family members through difficult times, organize events to generate funds and educate others in order to end this deisease.

1

Volunteer

Rating: 5

As an advisor to OCF and working within the dental profession for over 33 years, I have been touched by the many individuals who have turned to OCF when they needed help. OCF is the organization who steered many patients toward the right treatment center, the best doctors, and the absolute best advice for their individual situation. Brian Hill (Founder of OCF) is a champion, a survivor, and truly the most dedicated person I have ever met. I wish OCF continued success in all of their endeavors so their great work will continue.

1 wilckdds

Volunteer

Rating: 5

Although I did not find the Oral Cancer Foundation until I was home recuperating from my tongue surgery, I have found it to be a way for me to expand my commitment to early detection of oral cancer. As a dentist and an oral cancer survivor, I have found myself in a very unique situation. Since joining the OCF in April of 2005, I have found a new meaning to the term "helping others". The number of people from all walks of life that spend hours of their precious time helping others get through this dreadful disease, is boundless. My OCF "family" have allowed me to meet some of the most generous people in the world. From Brian Hill, the founder, to people in my own neighborhood and people around the world, the OCF forum provides a place for us to gather and help and support survivors, as well as family and friends of oral cancer patients. Being a member of the OCF has spurred me on to be more pro-active in oral cancer awareness, than I ever was before. I have run 3 oral cancer screening events, written articles for local and national dental magazines, aimed at getting dentists to incorporate oral cancer screenings in their offices. I have been the top fund raiser for the OCF cancer walk in Harlem, NYC for the last 2 years. I will also be a speaker at a walk and fund raiser for the OCF this coming September. I try to get to the forum at least once a day looking for ways to use my background to help others. Many people, even the members, are not aware of the vastness of the OCF website. There is no other site that comes close to having the content that the OCF website has. Just looking at the home page, www.oralcancerfoundation.org, and the list of links there, will give anyone an idea of how much content is available. The Oral Cancer Foundation website truly is the only place to go for the "answers to questions, advice, support and inspiration".

43

Volunteer

Rating: 5

I have been associated with the ORal Cancer Foundation for about a year and a half now. I first got involved due to my brothers passing of tongue cancer, I wanted to organize a memorial walk and donate the proceeds to an organization devoted to the needs of oral cancer patients, while also creating awareness of the disease. My brother and our whole family had never heard of this disase before and once we learned that he would be here today if he knew the signs of oral cancer, Ihad to do something to help others. I could not help my brother win his battle but I could help others know the signs so they would not have to experience the extreme pain and suffering he endured. I found the OCF, talked with Brian Hill,the founder, and was totally inspired by his own battle and his dedication to spreading awareness. The survivor forum on the site is a place where oc patients/caregivers can express their concerns, give advice and just be a friend. I have never been so inspired before when I read the caring messages each member sends. Without this avenue, these people have nowhere to go. Oral cancer victims now have a place to go and know that people will listen, care and support. I wish my brother knew of the OCF while he was sick, he could have received great information and support. This organization is a beacon of hope for so many. Brian Hill is relentless in his pursuit of making people aware of this disease and supporting research programs devoted to oral cancer preventiveness. I now help the OCF in its efforts by helping others plan events to support the foundation efforts. My life was changed in an instant the day my brother was diagnosed. My life today is rewarding because I am making a difference in peoples lives. The OCF is making a difference in peoples lives - -by its programs, their research, their support, their guidance, and most of all hope.

1

Volunteer

Rating: 5

The best site in the world for Oral cancer patients, caregivers, friends and family. I was a Stage IV and went through treatment without the benefit of this site. After my treatment was over the Founder saw me post on another OC site where it could take days to get a response and invited me to join the OCF which I did. I asked a question and in 15 minutes has 6 responses. I have been a regular poster ever since as I will never let someone go through this barbaric treatment alone like I did.