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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

Advisor

Rating: 5

The Oral Cancer Foundation helps oral cancer patients and caregivers during their darkest days. Invaluable and correct medical info and support is given to those in need. This small nonprofit makes a nationwide presence with campaigns to bring oral cancer screenings and awareness of oral cancer to the general public.

Previous Stories
5

Volunteer

Rating: 5

I LOVE, LOVE, LOVE the Oral Cancer Foundation!!! Its is a very small nonprofit that has a worldwide presence. The Oral Cancer Foundation provides factual medical info and support to help oral cancer patients and caregivers. When a newly diagnosed patient joins the online support group, they have found a new "family". Members embrace them and offer encouragement and support thru all their ups and downs. I couldnt think of another organization anywhere that cares for each member like The Oral Cancer Foundation does. Im proud to be a member and also a volunteer.

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2 Anne-Marie1234

Volunteer

Rating: 5

I found out about the Oral Cancer Foundation when my son was undergoing Radiation treatment for oral cancer. As I waited for my son to get back from his treatment, a young man sitting nearby came over to me and as he left for his own Radiation treatment, he smiled as he bent over and said to me, "Go to the Oral Cancer Foundation. They can help". I think often of this young man often and bless the day he led me to this wonderful organization. I don't know what we would have done without the kind and compassionate and knowledgeable help we received from everyone at the Oral Cancer Foundation. and all its volunteers throughout my son's treatment and beyond. In those early days of my son's recovery, I was online with the OCF many times throughout the day but no matter the time of day or night, there was always someone to help with never ending compassion and practical suggestions. They helped me over and over to help my son recover and to be strong for him. Day by day, I learned how to care for him and through the experience of others who were a little ahead of where my son was in his treatment, I was encouraged and was helped to learn what to expect at each stage. The research that this organization is part of is beyond amazing in what they have been able to do. I am so very grateful to Brian Hill, the founder for creating this tremendous organization.

Previous Stories
1

Client Served

Rating: 5

My son and I found the Oral Cancer Foundation almost 8 years ago when he was diagnosed with Squamous Cell Cancer. Without this organization I don't know what we would have done. We found all the latest information, plus the support and compassion from members who had direct experience with oral cancer. Over the years I've been amazed how this site continues to keep us informed about all the latest research and information on Oral Cancer as well as the technical improvements to the site which makes it even more perfect than it already was! My son is cancer-free now but does have long term issues as many patients do, so we continue to benefit and learn from all the developments and issues related to the effects of radiation treatment which he received. I am so very grateful to Brian Hill, the founder of OCF and to all the wonderful people who make this the great organization that it is.

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2 Elizabeth225

Volunteer

Rating: 5

I found the Oral Cancer Foundation’s online forum while going through treatment. The wealth of information and support that is provided is priceless. The foundation’s mission is designed to reduce suffering and save lives through prevention, education, research, advocacy, and patient support activities. Coping with oral cancer can be complex. Not only is the patient dealing with a life-threatening disease, but also with changes in physical appearance, speech, the ability to swallow and eat, smell and taste. I firmly believe in spreading awareness and getting screened because getting screened can literally be the difference between life and death. I don't know what I would have done without OCF.

2

Volunteer

Rating: 5

My family is very grateful for the Oral Cancer Foundation's work in supporting patients and their families as they navigate diagnosis, treatment, and survival, and for keeping the public abreast of research and and relevant news. The support forum has been particularly helpful. My mother was diagnosed with advanced squamous cell carcinoma of the tongue, and through OCF, we have been able to research clinical trials, access other resources, and communicate with survivors and caregivers farther along in the process.

2

Volunteer

Rating: 5

My mom became a member of the OCF after her first battle with oral cancer. During my mom's nine year battle the OCF provided support, resources and friends that helped her endure. Unfortunately, my mom lost her battle with oral cancer in 2011. The OCF continues to be an amazing outlet for me to help spread awareness and promote oral cancer screenings. I am so grateful for the OCF and everyone associated with this foundation!

davidcpa

Volunteer

Rating: 5

I survived oral cancer and can't thank the OCF enough for all that it has done fopr me over the last 8 years of recovery.

Previous Stories

Volunteer

Rating: 5

I have been coming to this site for over 6 years on a daily basis helping others that have not been where I have. It is truley the BEST oral cancer website IN THE WORLD.

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Theresa41

Volunteer

Rating: 5

I was diagnosed with stage 3 tongue cancer last August. As a 35 year old mother of 3 I was devastated. I of course went on the Internet to learn all I could about oral cancer. I came across this site and immediately felt at home. I was able to get support all during my radiation and chemo treatments. I was also able to relate to others and help with issues as well. I could not have gotten through it without this site!

4

Volunteer

Rating: 5

I found OCF when researching reconstruction of my mandible which had been removed because of cancer. I learned a great deal from the website and received honest and helpful information and support from the forums. I continue to follow the latest news via the RSS feed on my homepage. On the forums I learned much about the importance of having others who understand the impact this form of cancer makes in a person's life. I have had two other forms of cancer and fond this site to be much clearer, better organized, and more reliable on a scientific level than sites devoted to other forms of cancer.

3

Volunteer

Rating: 5

When my husband developed worrisome symptoms three years ago, the OCF provided emotional support for me as a caregiver, and education for both of us moving through diagnosis, work-up for treatments, the treatment itself, recovery and return to a new normal. OCF provides education, emotional support, and a host of practical tips on dealing with this dreadful disease. My husband made it through in good order, and this morning we enjoyed a wonderful walk in the park together. OCF helped get us there.

1 Jo__18

Volunteer

Rating: 5

The BEST by leaps and bounds Oral Cancer Foundation in the world. I found this site 7 years ago during my treatment for Stage IV oral cancer and was helped beyond what any doctor could do and I am still active today helping others going through the same treatment.