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2018 Top-Rated Nonprofit

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

361 Stories from Volunteers, Donors & Supporters

2

Client Served

Rating: 5

When we are first diagnosed with cancer we are all lost and terrified. That is pretty much true for all of us. What we need is to find a group and find it quickly that shows us and convinces us our cancer is not a death warrant, that it is survivable and thrive-able. OCF did that for me. Their members and staff are all supportive, knowledgeable and willing to share. Because they are a well moderated forum they don't have or tolerate misbehavior on their forums.

Like others have said, I give them 5 stars only because I can't give them 10.

2

Client Served

Rating: 5

When I was diagnosed with Tongue Cancer I discovered this organization almost immediately. I utilized the forums and the literature they had to manage my treatment and become a good patient advocate. This organization doesn't stop at just the diagnosis and treatment phase but continues to long term because survivors need information to manage long term effects of the treatment.

2

Client Served

Rating: 5

I am giving OCF 5 stars because I can't give it 10. This wonderful organisation provides imperative support to oral cancers patients and their families, through the patient forum and the authoritative newsfeed. The administrators are cancer survivors who are passionate educators and supporters of others, valuing scientific veracity and honesty in their provision of information. I found this particularly important as cancer can make patients and families feel utterly powerless, whereas knowledge from a trusted source is empowering. I know, as does every forum member that no question is too trivial or too personal or too embarrassing or has been asked too many times, such is the culture of OCF. Technically, the forum is user friendly, being easy to navigate and intuitive.

When my brother was diagnosed with Stage IV cancer our family was devastated, with no clue as to what sort of questions to even ask his treating doctors. I am so thankful that I happened upon the OCF in my search for support and information on the Internet.

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.

1

Client Served

Rating: 5

I've been active on the OCF patient/caregiver forums since my husband was diagnosed with very-early-stage oral cancer in 2006. I was welcomed into a club we never sought to join and received invaluable advice. Over the years I've seen how the support of people who have "been there, done that" has helped newcomers survive -- and even thrive -- during the hardest points of treatment for this often life-threatening illness. The main pages of the site contain a wealth of information about various types of head and neck cancer, making the site "one-stop shopping" for people afflicted with this disease and for their families, who are often equally as affected, though in different ways. Since my first experience with OCF in 2006 (and my husband's full recovery), I've offered support and advice, when appropriate, in the forums.

1

Client Served

Rating: 5

Informative place for anyone diagnosed with head and neck cancer. Website is well designed, accuracy of information and support on the forums is second to none.

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.

Don_15

Client Served

Rating: 5

oral cancer survivor now one year NED. OCF is an incredible resource for gathering real first hand experiences of those who are under treatment and those who have completed treatment. Other resources are invaluable to get up to speed on this cancer and educating those preparing for the difficult journey ahead.

Previous Stories

Client Served

Rating: 5

Forum is filled with great amount of real first hand cancer experience. Best place to ask and get direct and honest answers and guidance thorough diagnosis, treatment, and post-treatment issues.

Read more

Client Served

Rating: 5

The oral cancer survivors, caregivers, and people still fighting that posted on OCF's Patient Forum provided insight that my husband's doctors could not. Good advice and kind and encouraging words kept him going during some very dark days, and I am very grateful.

Client Served

Rating: 5

OCF is a great community for anyone impacted by oral cancer. Every day OCF replaces fear and despair with information and hope. Best of the best nonprofits.

Previous Stories

Client Served

Rating: 5

Even two years after treatment I visit the site several times each week. The community is so sincere, compassionate, and helpful to anyone struggling to deal with this terrible disease. Until a cure is found it is the folks from the Oral Cancer Foundation that will help anyone with the daily questions and struggles. For most people it is so great to connect with others who have already been there, and can reassure you the battle is worth it, and there is still a lot of life to live ahead for you... God bless them all.

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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Client Served

Rating: 5

As a caregiver to someone with oral cancer, I have relied heavily on the OCF forum for support and guidance during and after my husband's treatment. There is no substitute for being able to immediately talk with hundreds of others who have gone through the process before you, and to have this forum available 24 hours a day. I am extremely grateful for the support I have received at all hours of the day and night. I would have felt much more alone and in the dark if I had not found this organization.

Client Served

Rating: 5

Great information on head and neck cancer! Provides support for patients before, during, and after treatment. They do good work.

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.

Client Served

Rating: 5

On April 23, 2008, I was diagnosed with squamous cell carcinoma on my left lateral tongue. Recommended treatment was a partial glossectomy with reconstruction, neck dissection and 7 weeks radiation with concurrent chemotherapy. Yea, it was all Greek to me too! But with the help of the Oral Cancer Foundation and in particular, the user forums, I was able to navigate my treatment and nearly 6 years after treatment, I'm still here and thriving. I cannot begin to imagine where I'd be, or *how* I'd be without the resources and support I found at OCF.

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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1 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!

1

Client Served

Rating: 5

Never would I thought my husband would face cancer at the age of 57. What a shock to have oral cancer since he never smoked or drank and it was non HPV. Through this site I have found the information and support that helped me as a caregiver go through this journey of treatment. Often issues would arise from radiation and treatment and I was able to relax and say that is normal from what others had shared of their experiences. There are many knowledgeable people who continue to offer their advice and opinions and share their personal experience. The forum is a place to come to when support is needed from those who have been down the same road because often friends and relatives just don't relate to what we are going through.

1

Client Served

Rating: 5

In the past month I've been diagnosed with an oral cancer. I began to search for information (in addition to what was provided by my consulting oncologists) and was greatly relieved to find such a great resource as this and so specific to my ordeal. Not merely informational but supportive and caring.

1

Board Member

Rating: 5

I was diagnosed with oral cancer back in April of 2014. With very little information on my condition I did a quick online search to try to learn more and luckily stumbled upon the Oral Cancer Foundation. The boards and forums were filled with information and other people in similar situations. When you face something like this it is truly a blessing to be able to get information and talk to other survivors or caregivers and to feel supported from people who fully understand what you are going through. This site provides a wealth of knowledge and hope for people who are diagnosed. I am so glad that I found it as I am sure it would have been much harder had I not been able to get advise and support from those who have traveled a similar path.