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2019 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 53,000 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 our 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

371 Stories from Volunteers, Donors & Supporters

2 Jane87

Client Served

Rating: 5

I was diagnosed with tongue cancer earlier this year. Finding he Oral Cancer Foundation has been a wonderful resource and support for me. I cannot imagine having to go through this ordeal without this foundation!

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

Professional with expertise in this field

Rating: 5

As a dental hygienist, part of my daily job is to educate patients about oral cancer. The Oral Cancer Foundation has been an incredible resource for vetted, up to date, and reliable information related to trends, risk factors, current research and best practices. After volunteering at community screening events, one of my own family members was diagnosed with oral cancer and I was blessed that I was able to refer him to this foundation as he fought one of the toughest battles of his life. Information he received truly made a difference in his treatment decisions and thankfully he is alive and thriving today! With 24/7/365 access, OCF is truly a top rated non-profit serving the public, patients, and the dental/medical communities!

2

Client Served

Rating: 5

There are not all that many places to share the experience of having a portion of your tongue removed. Many less to share that experience with people who provide the support and encouragement that I found at the OCF. It is loaded with information, compassion and it's done with sincerity from people who have been there. It provided me with somewhere to go and people to turn to in some very dark and scary times. I will be sticking around to try to contribute in whatever way I can. I love the OCF!

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!

4

Professional with expertise in this field

Rating: 5

Words could not express the value of the Oral Cancer Foundation and it's impact on the lives of oral cancer patients and their families. As a speaker on the subject of oral cancer, I direct all healthcare professionals to the site. It is meticulously updated with the most current information complemented by a vast array of educational resources. However much more than that, is the ability of the foundation to advocate, relate and support those who are going through tremendous challenges in their lives.
The founder, Brian Hill knows first hand the devastation of the disease. His empathy and compassion are exemplary. He has had the ability to instill the same kindness and warmth in the team that he works with. This became evident when one of our own family members was stricken with late stage oral cancer and eventually succumbed to the illness. The team rallied and supported through every phase of treatment. Our world is a much better place with having the Oral Cancer Foundation in it.
Jo-Anne Jones, RDH

3

Client Served

Rating: 5

The Oral Cancer Foundation (OCF) is the best source of information and support for those impacted by oral cancer. While some think this is a rare cancer, oral cancers will be newly diagnosed in about 115 new individuals each day in the US alone, and one person dies from oral cancer every hour of every day. Approximately 43,250 people in the US will be newly diagnosed with oral cancer in 2014. Finding information and support for those newly diagnosed is difficult since this isn’t one of the “popular” cancers. The OCF website and support forum fills that gap. OCF provides reliable, accurate and updated information on oral cancer via their website main pages or through the on-line support group. The on-line support group is available 24x7 and gives you the ability to connect with others that have gone through what you are going through. Now I did not feel so alone!

Previous Stories
2

Client Served

Rating: 5

The Oral Cancer Foundation is the best source of information and support for those impacted by oral cancer. When I was first diagnosed with oral cancer, I knew nothing about it and had so many questions. Eventually I found the OCF website and it was just what I was looking for! Reliable, accurate and updated information on oral cancer which answered all the questions I had and was unable to find the answers for elsewhere. Also, the on-line support group is the best – available 24x7 and gives you the ability to connect with others that have gone through what you are going through. Now I did not feel so alone!

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1 Tracy51

Client Served

Rating: 5

I found the Oral Cancer Foundation when I was a terrified, newly diagnosed patient. The community forum and educational resources were invaluable to me then and through my treatment and recovery. As a three year survivor, I still often return to the community forum to both receive and offer support and information. I am so grateful to this organization.

Previous Stories
1

Client Served

Rating: 5

I found the OCF website shortly after being diagnosed with oral cancer. The information provided on their website was very helpful when I was trying to grasp the enormity of the diagnosis. The Survivor/Patient Forum was an invaluable resource for both information and support. It is extremely difficult to sift through all the information that's thrown at you while still reeling from the news that you have cancer. The foundation provided me with the information that I needed in a clear, concise format that was invaluable at the time. The forum provided me with a place to talk with people who understood what I was experiencing. I was relatively young and had a new baby when I was diagnosed. The forum allowed me to meet and talk with other women who were in similar positions. I can't overstate the impact that had on me. It was such a gift to know that I wasn't alone.

2

Client Served

Rating: 5

When you are diagnosed with cancer, there are simultaneously dozens of places to get advice and no places at all. What that means is it is easy to become overwhelmed with information and to almost drown in it. Cancer is scary - so very scary - and having a place to go, a place where people have been through what you're going through, makes an enormous difference.

The people at the OCF foundation are in treatment, survivors of treatment, caregivers to those with this horrible disease and yes, are sometimes those left behind. They are a wealth of knowledge and support because they have lived it. When I was diagnosed I nearly drowned in statistics, information and general fear. These people helped me sort it out. They continued their support by answering questions and providing encouragement throughout my treatment and have done so whilst I recover.

Best of all, I know that if I post today, two months since I last posted, I would be greeted warmly and my questions or concerns would be answered promptly.

This is a great site -- one of the most important in the world if you have head or neck cancer, and one of the best in the world for those looking for love, support and strength through one of the toughest battles in life.

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.

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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.

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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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