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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

42 Stories from Volunteers, Donors & Supporters

2 Anita11

Client Served

Rating: 5

When my husband was going through treatment for oral cancer, I spent many nights searching for answers to his condition. I found the Oral Cancer Foundation one night and felt as if I had come home. Here was an organization dedicated to oral cancer and I immediately connected with others going through similar issues. I am so grateful to the OCF for the information,, education and research they have sponsored. The Forum is a group of patients and caregivers available at any time to help when the going gets tough. I have made friends all over the world who are with me every step of the way. I can't thank Brian Hill and his staff enough for the support I have received. It has helped me get through very difficult times. Today, I give back by donating to this worthy organization in the hopes that I might help someone else as I have been helped.

Previous Stories
2

Volunteer

Rating: 5

My husband is an oral cancer survivor and I am his caregiver. I found the Oral Cancer Foundation during a particularly difficult time in my husband's treatment. The support I received from the Forum and the comprehensive information on the website were lifesavers for me. I have learned so much about this disease and so much appreciate what Brian Hill has created. There is no other site like this for those affected with this awful disease. I have made lifelong friends from the OCF Forum, many of whom I have met at the Awareness Walks. I consider myself a volunteer in that I support others in the Forum with the my experience of OC, and I give generously to the cause as I believe that awareness and prevention are key to a healthier future.

Uptown

Client Served

Rating: 5

I began this journey July 18, 2003. There is so much to learn and the medical community doesn't manage the side effects of treatment well. Through the Oral Cancer foundation, I have met thousands of people and almost all of them have had suggestions as to what worked best for them. Because of the randomness of recovery, this information proved valuable to me back then and continues to.

I believe the Oral Cancer Foundation provides the most science-based evidence possible to help disseminate all the complexities of treatment.

Previous Stories
3

Client Served

Rating: 5

As a 10 year survivor of oral cancer I must say that this journey was made much more tolerable thanks to the OCF community. Not only providing the most accurate, science-based information on any aspect of oral cancer, OCF is diligently educating dental professionals in techniques and information sharing to strengthen the front line battle against this life changing disease.

In addition OCF has provided an on-line community of approximately 9,000 registered users that are either oral cancer survivors, family and/or caregivers with hands on experience in dealing with the diagnosis through post-treatment issues.

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3

Volunteer

Rating: 5

Hearing the words "You have cancer" sends you into a downward tailspin. Finding the OCF website and the survivors forum is a lifeline to pull you out of the despair and give you hope to survive treatment. I've had both oral cancer and breast cancer and the treatments are 180 degrees different. It is one long hellish trip. This site not only shows you in pictures what you are up against but gives you thousands of survivors that have made it through and can help you make that journey also. I'm a stage IV tonsil cancer 11 year survivor and this site helped get me here!

2 Janis J.

Volunteer

Rating: 5

I am righting this for my friend Lisa Petersen who was diagnosed with Stage 3 squamous cell carcinoma....cancer of the tongue in 2010. After a very short battle with this disease, she lost her life at 41 years old. Lisa was determined to speak, but cancer silenced her words. Cancer has not silenced her voice..... During her fight, she contacted the Oral Cancer Foundation, and found support with two wonderful women dedicated to this organization, Christine Brader and Susan Lauria. They showed so much support for her while she was ill. Lisa was so full of life even though her body was failing from this disease. If Lisa was alive today......she would be righting this to support the Oral Cancer Foundation. She wanted to do a walk with Chrisine Brader in her future, which never happened. I have become Lisa's Voice to help spread the awareness of this silent deadly disease. Through the help of Christine and Susan I held Lisa's Voice Oral Cancer Awareness event to support the Oral Cancer Foundation. I would give this organization 10 stars!!!! So many hardworking volunteers and the dedication is unbelievable. The dental communities across the US and other countries give the OCF total support. Cancer was not in Lisa's plan for her life, but if she was here today, she would be righting this.

2 KPS5

Client Served

Rating: 5

When my husband was diagnosed it was terrifying. We had so many questions and so we searched the internet. When we found The Oral Cancer Foundation, not only did we find answers to our questions, we found a family that included others battling along with us as well as many folks who had fought the battle and won, but were still on the forums to help others get through treatment. It was an amazing gift to me, the caregiver, especially. I felt very alone prior to finding the forums. Nobody really understood what I was going through, or they didn't care to hear it as it scared them too much. On the forums I found support.
Thank you Oral Cancer Foundation!!

Previous Stories
1

Volunteer

Rating: 5

My husband was diagnosed with oral cancer in July of 2011. We completed treatment at the end of October, which is just about the time I found the forums of the Oral Cancer Foundation. It was such a blessing to have so many people understand exactly what I was going through as a caregiver. I found this awesome support system that helped us get through the next couple of months after treatment ended. Any questions I had someone had an answer because they had been through it. Just wonderful!Thank you so much OCF for providing such a valued support for us.

2

Volunteer

Rating: 5

As a Dental Hygienist, The Oral Cancer Foundation is invaluable to me. Just this week a patient was diagnosed with Oral Cancer. Our office was able to give the family a packet of information, that will aid them enormously during this time. It was all taken from The Oral Cancer Foundation website.

The Oral Cancer Foundation allows dental professionals to stay educated on the latest research and information on Oral Cancer, and pass this on to our patients. Because of OCF sponsoring April as Oral Cancer Awareness month, and supporting offices nation wide, as they offer free Oral Cancer screenings during the month of April, we are able to reach the local community and provide screenings to those who might not other wise receive a life saving screening.

Additionally, the OCF awareness events held across the country throughout the year, provide another avenue to reach out to the local community in raising awareness and providing screenings.

2 Eric28

Volunteer

Rating: 5

I was 33 years old when I was diagnosed with StageIV metastatic Oral Cancer. The treatments and surgeries that saved my life however left me disfigured, disabled, and dependent on the opiate pain medication Fentanyl. I felt lost and alone, without hope. I found the Oral Cancer Foundation's Online support forums 11 months after diagnosis and it was a ray of light for me. I was able to connect with survivors and other patients who understood my struggle and relate to where I was at. With their advice and support I've been able to rebuild my body and free myself from the opiates, and begin to live again. I can't express the gratitude in my heart for the Oral Cancer Foundation or the Angels of mercy who are the staff and volunteers that spend their time helping those in need.

1

Volunteer

Rating: 5

My mom has tongue cancer. She has been treated for it twice - Stage 1V bot times. The treatments have been just brutal but she has gotten through them. I know she has gotten alot of information from this website and made friends from it. It has given her alot of ideas about what to expect and what questions to ask the doctors.

1

Volunteer

Rating: 5

I've been a smoker for 8 years now and it's probably the hardest thing I've had to endure throughout my hardships with life. Although I had quite for 2.5 years straight, I find myself today still lighting up. Each morning I wake up and cough for about a good minute, which is no way to start off your day. Since my personal friend Megan Cannon at OCF has informed me about the risk to my health, and her extreme concern for every individual that is putting themselves at risk from smoking, she has giving me the will to cut back and be more aware of how much I smoke. Today I am down to 4-6 cigarettes a day (sometimes more, sometimes less) from my 1 pack plus a day. Megan is perfect for OCF and their cause. Not only has OCF helped me, but through watching Megan inform and help so many others (people all alike) she has helped me to live a healthier life. So I want to say Thank You to Megan Cannon and OCF for their support.

1 Sa19ra

Volunteer

Rating: 5

Oral Cancer has been and still is one of the orphan cancers. Not many people know that oral cancer kills one person per hour,everyday 24 hrs a day. I did not know this eventhough I have been in dental field for quite some time now. I came to know about this from the facts and stats put together by the oral cancer foundation. That was an eye opener. I came to the OCF web page while I was looking for information to help my sis, when got diagnosed with cancer of oropharynx. The information on this website and in the forums has been great help in going about the treatment and locating the resources. This is my personal experience. and the people at the OCF are amazing, everyone truly wants to help and lower the mortality rate associated with oc by raising awareness and helping people by giving them much needed information. Without the Oral Cancer Foundation there would not have been any awareness about the death rate and devastation it's causing in the world. The OCF has forums are extremly helpful & support those who suffer the burdens of the disease. The Ocf has made the research efforts possible to identify HPV as a cause of oral cancer, I think which is remarkable. OCF is the best source of information & facts about the oral cancer on the web,period. I believe the oral cancer community would be worse off if Brian Hill or oral cancer foundation will not be there to create awareness and inform everyone about oral cancer.