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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

95 Stories from Volunteers, Donors & Supporters

1

General Member of the Public

Rating: 5

I found the OCF website after my daughters second recurrence of oral cancer. The knowledge, information and support that I have gleaned from the Oral Cancer Foundation and members has been immeasureable to help understand the foe we were up against. The news does have to get out about this dreaded disease and the aftermath of side affects and disruptions to peoples lives. Go OCF, spread the word.

1

General Member of the Public

Rating: 5

I am 45 and female No one can describe the treatment for oral cancer and its terrible side affects unless you have been there. i was devastated at the end of my treatment. I had no saliva which to others does not sound to much of a price to pay for your life but you can not talk, eat or stop gaging along with my neck all sunken in and the burn marks on my face from the radiation i went into depression with severe panick attacks. Tonsil cancer is rare and i was given no support from local organizations. no one at my doctors surgery had ever been diagnoised with this cancer. i began to search the internet for other suffers and found The oral Cancer Foudation. i found other suffers and was able to get excellent advice on how to live with the scars and various side effects. The people were fantastic. without them i really dont think i would be here today. There are plenty of cancer charities but oral cancer and head and neck cancers have very little support. You feel totally on your own. The site is easy to use when your brain is all over the place and the advice is quick and caring. i am 2 years 5 months post treatment and do not visit the site that often now as it brings back awful memories when i read patients stories. i have regained some of my life back but have to constantly work at keeping the depression at bay. i hope to one day get my old self back and be able to help others like they helped me. but for now i am trying to keep my mimd on other things. Please recogonise this foundation for the great work that it achieves.

1

General Member of the Public

Rating: 5

My beautiful young daughter (age 43) fought and finally succumbed to this dreadful oral cancer. Throughout our 2-1/2 year ordeal of surgeries, chemo's & radiations I sought advice and comfort at the Oral Cancer Foundation site. I don't know how I would have made it without the wonderful people who answered my ever question & guided me through the long terrible days and nights. I am now honored to offer my help and support to those who continue to fight the valiant fight against this horrible nightmare of a disease with my experiences. The Oral Cancer Foundation is a multitude of angels waiting here on the internet to hold your hand!

1

General Member of the Public

Rating: 5

I found the Oral Cancer Foundation website after I had been diagnosed with tonsil cancer. I had just had a preliminary visit with a radiation oncologist. When I saw him, I really knew nothing about the disease and its treatment. By the following week, when I had a preliminary consultation with the medical oncologist, I had learned a great deal about the the disease and treatment protocols. I was able to ask intelligent questions and could make an informed decision about ;the drug to be used in the clinical trial I enrolled in.

1

General Member of the Public

Rating: 5

When I come to the Oral Cancer Foundation, I was scare, confused and had so many questions. The people at this site helped me so much, They told me the truth and let me know what to expect, they put my mind at ease and helped me get thur it. I looked around before coming here and found this site had the most complete information, that was easy to find and understand. 67 year old female, Oral cancer, in chin and gum area. 39 Radiation and 8 Chemo treaments.

1

General Member of the Public

Rating: 5

CANCER! What a horrible word. Although I was surrounded by a caring loving husband and family, I felt all alone. I had been diagnosed with tonsil cancer. Following 7 weeks of radiation, with one day each week of chemo, my treatments were complete. I was left with fear, doubt, and questions concerning my type cancer. This was all new to me. Then, thankfully, I discovered the Oral Cancer Foundation web site. How wonderful to know there was a place to go where you actually could correspond with others who had been through practically everything you had in dealing with the disease, but also dealing with the treatment and after effects. It is a privilege to know others have experienced mostly the same things I have, and at least I feel NOT ALONE. GOD BLESS everyone who is part of this wonderful site and I hope it continues forever! Julieann

1 DM32ASA

General Member of the Public

Rating: 5

My first bout with cancer was 2004, then 2005/2006 I found Oral Cancer Foundation in April of 2006. I was so thankful for this site. It helped me to understand what I had been through, & learn more of what was to come. If it was not for OCF I would be scared to death!! Instead I am well informed and supported by others. I also have the chance to give back to others as well. I encourage anyone with Oral Cancer to contact OCF for good information and support. I am proud to be a Member of OCF.

1

General Member of the Public

Rating: 5

This was such a helpful site for me to find out in a nonthreatining way what I was facing after my diagnosis. I didn't have all the symptoms but when they did arrive, I knew what to expect and they let me realize that there was light at the end of this long, dark tunnel. It's great to know that you are not alone in this fight and that others have gone before you and survived and are willing to share their pain and triumphs with everyone.

1

General Member of the Public

Rating: 5

I found the Oral Cancer Foundation to be the most valuable source of information. Information is current and factual. Far more so than traditional patient referred informational sites. Such as cancer.gov, cdc, webmd, medline, ect. Information obtained from The Oral Cancer Foundation allowed a partnership to develop with our treating physcians. Mutual trust developed when the physicians acknowledged and respected our information sources. We were allowed to be part of the decision making process. Knowing the pros and cons of each step and direction of possible treatment is ultimately the responsibility of the patient. We experienced a positive outcome and cancer free now for 4 years.

1

General Member of the Public

Rating: 5

I found this web site after my 34 y.o. husband was diagnosed with Stage 4 oral cancer. Thank God, he survived. The web site provided me with a trustworthy resource for accurate, helpful information. Even more importantly, they provided me with an opportunity to reach out to spouses, patients and survivors with my questions and my fears. Oral cancer has many cancer-specific problems and questions that general cancer websites could not address. I am incredibly grateful they were there when I needed them.