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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

Volunteer

Rating: 5

The second biggest help outside of my family, friends and co-workers was the Oral Cancer Foundation website and the Patient/Survivor message board contained within. The information contained on this site is squarely focused on Head and Neck Cancers. The message board is chock full of information, assistance and support, given by people who have gone through or were currently in treatments for this cancer or caregivers helping someone with cancer. Each person there has been touched by the effect of this grossly disgusting disease, from young to older adults, from all over the world.

1

General Member of the Public

Rating: 5

This Foundation was a lifesaver for our family. Oral cancer seemed to be relatively unknown and we were having a hard time getting information we needed from the medical community. The work done by Brian Hill on this site is invaluable to anyone stricken by this disease.

1

Client Served

Rating: 5

I have been involved with the Oral Cancer Foundation since 2003 when I was diagnosed with tongue cancer at the age of 41. I met some unbelievablely generous people who unfortunately did not survive their battles with this horrible disease, but they gave unselfishly to others while they were suffering themselves. I will never forget them or any of the other amazing friends I have made through OCF. It is unquestionablely the best source for information and support for people dealing with head and neck cancer.

1

Client Served

Rating: 5

When my husband was diagnosed with stage IV cancer of the largnx, I was lost. I then found the Oral Cancer Web site. It was a god send for me. I found reliable information on the disease, tips on treatment issues and a feeling that we were not alone. The Survivor/Patient forum gave me the tools to deal with being a caregiver. It made my life so much easier, as I knew what to expect from actual survivors and caregivers. Brian Hill has worked unselfishly to promote the awareness of oral cancer and give the world the wonderful tool of the web site. I hope everyone can be made aware of this organization so oral cancer can be diagnosed earlier and more lives can be saved.

49

Volunteer

Rating: 5

I live in rural Vermont. When I was first diagnosed with oral squamous cell carcinoma, I began searching the web looking for information and support. Fortunately for me, I found the Oral Cancer Foundation. I posted my situation on the patients/survivor forum and was moved to receive immediate caring responses and support. All of the responses advised me to go to a big city with a comprehensive cancer center for proper treatment. I followed this advice and it probably saved my life. The local hospital told me I had clean margins. The Mass Eye and Ear Infirmary's pathologists were convinced my margins were not clear and recommended radiation therapy, which I received. Throughout the process, I communicated regularly with other patients and survivors on the OCF's bulletin board. I was and remain extremely impressed at the compassion and support that is expressed there. Make no mistake, this is a terrible disease and victims of it truly suffer. However, the suffering, anxiety and dread are alleviated and mitigated by the wonderful community that has formed at this foundation. I now help to keep a section of the OCF website up to date. That is the oral cancer in the news section and I regularly try to post articles of interest to both the lay and professional readers of this web site. I feel like it is a small way to repay the debt I owe to this foundation.

1

Donor

Rating: 5

The OCF has been instrumental in helping my sister-in-law Suzanne Gallo in her fight against oral cancer! I donated money and participated in a walk in May 2009 w/ Suzanne and other family members to support efforts at finding a cure for this disease!

1

Client Served

Rating: 5

I discovered the Oral Cancer Foundation after I had completed treatment for Stage IV Head & Neck cancer. The ability to get answers to my "is this normal" questions, and to subsequently be able to help others through the Patient /Caregiver forums have been invaluable to me in aiding my recovery, both physically and mentally. The information available through the Foundation's website is unparalleled. Brian Hill's dedication to this cause makes him a true hero in my view. His untiring efforts to educate the public and professionals on the important of screening for early detection are most mpressive. I only wish I could contribute more financially to hte foundation.

2

Volunteer

Rating: 5

The Oral Cancer Foundation's website is full of information for oral cancer patients and their caregivers. Its founder, Brian Hill created a place where questions can be asked and support is shared. This is especially helpful to newly diagnosed patients who face fear and uncertainty. Its a very scary time and so many do not understand all the medical jargon and knowing which doctor does what. The Oral Cancer Foundation has saved my life. I found the site right after I was diagnosed with my first round of cancer. The forum members embraced me and helped me thru my treatments. They were there with me when I had my first recurrance less than a year later. The same warm, caring, knowledgable people are still there helping me now with my thrid round of cancer. I have met many of these special people in person and am proud to call them my friends. One story that shows how wonderful a site OCF is. A woman joined and said she did about 10 or her radiation treatments and couldnt continue due to the severe side effects. This woman had several young children that depend on her. Jointly thru encouragment and examples we got her to return to her treatments. She was so touched by all the responses and kindness of strangers she went back to finish her radiation.

1

Client Served

Rating: 5

I am an oral cancer survivor, and I first found the Oral Cancer Foundation when I was diagnosed, in shock and fear, not knowing what I should do. As a nurse, I knew this was very serious and I wanted to make sure I was as knowledgeable as possible about oral cancer and my treatment options. (The Dr. that diagnosed me was not much help) The informatin on the Oral Cancer Foundation website helped me understand my best options for treatment, and make a decision as to the best place to go for treatment. In addition, the discussion forum is a godsend, with both oral cancer patients, survivors, caregivers and professionals lending help and support to everyone who participate. At the helm of all this is Brian Hill, the founder and chief executive, who has given his life to making both the foundation what it is today, and tirelessly lobbying for more oral cancer research and more funding. His efforts have made a huge difference in both the research and awareness of oral cancer.

1

Professional with expertise in this field

Rating: 5

Thank god for the Oral Cancer Foundation. Although oral cancer kills one American an hour, it is disease which has been largely unknown by the general public. However, this is slowly beginning to change based in part on the great website that OCF runs, but more importantly by all of the public awareness that has been generated in recent years by OCF. OCF has also lobbied effectively for more funds for oral cancer research, and for the American Dental Association to pay more attention to the condition. Arguably, nothing a dentist does for a patient is more valuable than an oral cancer exam, and too few dentists do this exam on a routine basis. OCF is helping to change all of that.

2

Volunteer

Rating: 5

The Oral Cancer Foundation is saving lives and the founder, Brian Hill, is one of the most hard working and selfless people I know. I have witnessed Brian tirelessly guide family members through difficult times, organize events to generate funds and educate others in order to end this deisease.

1

Volunteer

Rating: 5

As an advisor to OCF and working within the dental profession for over 33 years, I have been touched by the many individuals who have turned to OCF when they needed help. OCF is the organization who steered many patients toward the right treatment center, the best doctors, and the absolute best advice for their individual situation. Brian Hill (Founder of OCF) is a champion, a survivor, and truly the most dedicated person I have ever met. I wish OCF continued success in all of their endeavors so their great work will continue.

1

General Member of the Public

Rating: 5

When my husband was diagnosed with throat cancer in 2007, I immediately turned to the internet for information that would help me cope with this devastating news. One of my searches led me to the Oral Cancer Foundation. I was so grateful to find such a rich resource for anything related to my husband's diagnosis. I spent days reading all of the pages and topics available. I started feeling so much more in control of my husband's treatment plans and how we were going to get through the next months. Information is definitely power and the OCF website was my place of power and solace. I found the message boards to be a godsend in every way...both for medical decisions and emotional support. I spent time on the OCF boards everyday trying to glean information that would allow me the best chance of getting my husband thru his treatments successfully. I continue to visit the website everyday to give back what was given to me. Thank you Oral Cancer Foundation for all that you do.

1

Client Served

Rating: 5

When my long-time boyfriend was diagnosed with tonsillar cancer that had spread to the lymph nodes, I found (and continue to find) that the OCF was extremely helpful in providing information about different aspects of oral cancers, including symptoms, treatments and side effects, long-term outcomes, etc. The support forums have been invaluable.

1

Client Served

Rating: 5

OCF is a comprehensive resource on everything to do and know about oral cancer. Perfect for the newly diagnosed person who has never even heard of the disease. Every public service announcement, article, and mostly the patient forum is priceless for any new survivor of OC. Thank you Brian and team for all your hard work!!!

1

Client Served

Rating: 5

In the fall of 2008 I had an excisional biopsy of a swollen submandibular lymph node. One of the primary fears for myself and my doctor was that it would turn out to be SCC oral cancer. I found the OCF and introduced myself. The members are very warm and friendly and helped me to keep my emotions in check until I had a diagnosis. Fortunately, in my case no cancer was found however I continue to follow the experiences and knowledge sharing on the OCF. Just reading the experiences of those unfortunate enough to have gone through treatment for oral cancer has enabled me to quite smoking and continue non-smoking for the past 10 months. Thanks to all who administer and participate in the OCF site.

2

General Member of the Public

Rating: 5

I've worked with OCF since its inception. Founder Brian Hill has worked tirelessly on its success. At great personal sacrifice he has built the largest most successful Oral Cancer Foundation on earth. OCF has reached out to millions in one way or another. Either through public awareness, personal counseling or generating contributions, his leadership has been the key to its success.

45

Client Served

Rating: 5

When I was diagnosed with Head & Neck Cancer in 2007, it was a devastating, humbling experience. OCF has helped me over the past two years by providing timely information and peer support. I, in turn, have attempted to help others through the ordeal from which I have now emerged. While there are many cancer support organizations online, this one is particularly good at providing current, unbiased information, and the owners/participants are almost universally sensitive and on point in their comments/suggestions. Taken as a whole, this is a wonderfully comprehensive experience for a cancer type that receives little publicity, but is among the most devastating in terms of the short and long term impacts of treatment, and a significant mortality percentage.

3

Client Served

Rating: 5

The undisputed best virtual support group for those who lives have been impacted by Oral Cancer.(tongue,cheek, tonsil,jaw, etc) Cancer is not monolithic and very few cancers cause such quality of life issues as oral cancer. Even "successful" treatment leaves many unable to taste, eat or swallow normally for the rest of their life. The psychological trauma is not currently addressed by insurance nor the medical teams. Right now OCF is the only non profit that meets the needs of not only patients but also their caregivers. There are no for profit competitors since there is no money in providing a free forum to help oral cancer survivors, patients and caregivers. Unlike many internet forums, OCF is actually moderated proactively and scams are deleted almost immediately. No nut job postings, no bogus testimonials for "miracle cures",no flame wars plague you like other forums I have tried. It has a limited niche audience by design and with a 50% or lower survival rate for this cancer, posters on the forum often die. I echo all the other comments in the other 7 reviews that were here when I wrote this and will not repeat them here.

47 cookey

Client Served

Rating: 5

I am the wife of an Oral Cancer victim.My husband died at the age of 44 in 2007.When he was diagnosed i was completely panic stricken and had no idea how to gain knowledge and understanding of how his illness and treatment would progress or what to expect during the immediate period following his diagnosis.I googled Oral Cancer and came upon OCF.I have been a member and supporter since that day,and even though my husband died just 8 months after his diagnosis i remain an active member and advocate for those who walk in our shoes. There are no words to express the value of this support group,when all hope seems lost OCF is there.The practical guidance,expert knowledge,emotional support,up to date information and the dedication to public awareness is just exemplory,and it never stops.Brian Hill our founder and champion,has dedicated his life to spreading the word about this very special type of cancer.The cinderalla of cancers that actually is more devastating ,and with the worst long term side effects,than any other of the highly publicised cancers that get money and media mileage thrown at them daily.