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2016 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

182 Stories from Volunteers, Donors & Supporters

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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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.

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.

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.

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

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.

Client Served

Rating: 5

I wish I had found the Oral Cancer Foundation before I did, it would have alleviated my suffering greatly.

The amount of "been there, done that" type of information available and freely given by those who have been through this ordeal is both amazing and incredibly useful.

I continue to suffer from recurrences of the cancer (I'm in my 6th at present) and this organization continues to provide comfort and support from the members to the members, God Bless the OCF and its members!

The Oran Cancer Foundation is an organization that deserves support at all levels!

1

Client Served

Rating: 5

As the caregiver to my husband, diagnosed 6 years ago with stage 4 base of tongue cancer, the Oral Cancer Foundation was my most important resource for information and support, outside of his physicians. I could even make the case that medical information, without support from the OCF, would not have been as successful.

It is almost impossible to explain how grueling the treatment for oral cancer was to complete. Once completed, we still needed help with numerous difficult side effects of the treatment. Six years post-treatment, I still rely on the information and member forum section of the OCF.

2

Client Served

Rating: 5

The Oral Cancer Foundation (OCF) is the very best small nonprofit! They help thousands of oral cancer patients and caregivers with their online forum. The OCF helps educate the public with awareness walks and oral cancer screenings. If all that isnt enough, they fund research projects to help make oral cancer discovered earlier and easier treatments for patients. The Oral Cancer Foundation is a wonderful organization that makes the most out of every cent. They could give other groups a real education on what a nonprofit is supposed to represent.

1

Client Served

Rating: 5

The Oral Cancer Foundation was vital to my recovery from head and neck cancer. The level of concern and caring from Foundation members and all those who contribute to its forums is simply amazing. I'm proud to be a member of the OCF family.

3

Client Served

Rating: 5

With my husband's diagnosis of throat cancer, my world spun wildly. We made it through the initial treatment. When we learned that the cancer had spread and wasn't as neatly contained as we'd been led to think it would be....my world crashed. It was then that I realized I needed not just the informational help, but also the emotional help, that was offered on OCF. I have made some new kind of friends, and I can't begin to elucidate all that the site has done for me--and by extension, for my family.

Client Served

Rating: 5

The best site to go for information and support if you are an oral cancer patient, caregiver, family member or friend of someone going through this disease. I did go through it and found the information and support invaluable.

2

Client Served

Rating: 5

They have a very informative website where you can get educated on the disease, and their forum is a wonderful place to be part of a community of people going through the same thing...it's incredibly comforting to reach others stories, ask questions, read about others' situations etc. and their forum leaders are always available and quick to offer answers and advice. I've met the most wonderful people through this site.

2

Client Served

Rating: 5

There will never be enough words to express my gratitude for the Oral Cancer Foundation website and the people on it. This is my second go around with oral cancer and I'm currently in treatment. I could not have made it emotionally this far without the OCF family. So many people on the site go about and beyond the call of duty to answer questions, encourage and impart invaluable information. Another aspect that I really appreciate about the website is that it's more than just a forum. It also has all the latest information on everything from research, clinical trials, news articles, and rehabilitation, just to name a few. Thank you OCF! - ngk