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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

1

Volunteer

Rating: 5

The Oral Cancer Foundation is small but mighty. Working firsthand with other volunteers, it is a group like no other. Motivated and passionate about helping those fighting oral cancer - survivors, family members, and friends alike. The walks that take place around the country are their own unique experience, dedicated to spreading awareness and fundraising for this important cause. A large percentage of donations received are in turn given back to relevant cutting-edge research, this is one of the top reasons I volunteer and donate to this cause. I wish more people knew about OCF, and the information available on the OCF website (oralcancer.org).

General Member of the Public

Rating: 5

My husband received the news that he had oral cancer in July. I spent 17 yrs working/teaching at a dental school in the midwest but never dreamed oral cancer would be a part of my life. Once he got the diagnosis, I started scouring the internet to learn more. I came across the OCF website and quickly joined as I was able to share my frustrations and questions as a caregiver with survivors and receive support plus information. I call this group my lifeline as they have walked through this process with me.

1

Client Served

Rating: 5

The Oral Cancer Foundation is AWESOME! I dont know what I would have done without their help when my father was diagnosed with cancer in the base of his tongue. Thank you to everyone at The Oral Cancer Foundation for helping me to get my father thru some of the darkest days of his life.

1 Anne-Marie1234

Volunteer

Rating: 5

For anyone undergoing the difficult days of surviving oral cancer, or if you are a caregiver to someone diagnosed with oral cancer, this site is unlike any other. It is the very best place to be to get all the latest, best, and most accurate information available. When my son Paul was diagnosed with Oral Cancer, he had a large lump under his tongue, and I was a basket case of worry and nerves. One day while waiting in the hospital waiting room as he was called in to get his radiation treatment, a young man sitting nearby came over to me and said "Go to the Oral Cancer Foundation's web site". He then left when he was called in for his Radiation treatment. He was he angel that led me to the Oral Cancer Foundation where I found so many wonderful, knowledgeable, and compassionate people. I was on the site during those early days of my son's recovery several times a day, and no matter what time of day or night it was, there was always someone ready to help with information and ideas and suggestions on how to help my son to survive what he was going through. There will never be words enough to describe how grateful I am to the founder, Brian Hill, and to all of the people at the Oral Cancer Foundation for my son's survival from this horrible disease. My son, Paul has been cancer-free since 12/19/06.

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2

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.

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1

Volunteer

Rating: 5

As a dental hygienist of 24 years, raising awareness and educating about oral cancer and HPV is my passion and mission. I joined as a regional coordinator with OCF 8 years ago. OCF provides current vetted and relevant research and information for dental professionals, enabling us to better serve our patients.

1

Client Served

Rating: 5

My wife who has leukoplakia was getting different opinions from specialists causing
us confusion and anxiety.We called OCFin hopes of finding an expert.We spoke to Brian Hill
the founder of OCF and explained the situation to him. We found Brian to be very knowledgeable pleasant and compassionate. He spent a large amount of time and effort answering all our questions for us to make a clear intelligent decision.
Dear Brian thank you and all the people at OCF for being there to help all in need and for you being a kind and wonderful person.
Harvey and Donna

1

Advisor

Rating: 5

The Oral Cancer Foundation is a wonderful nonprofit with a presence that caters to patients, family members and caregivers of this disease. They are heavily invested into scientific research, fact checking and honesty. The website is chalk full of information where if anyone did have any questions, they could pull up the website and will most likely find their answer. Patients could refer to the Patient Support Forum: a wonderful forum that is anonymous, moderated and serves as an outlet for those who have questions or may just want someone to talk to. Members of OCF are here to provide all the necessary information and care they can to everyone who has any questions. I am so happy to be a part of this great organization.

2

Volunteer

Rating: 5

The Oral Cancer Foundation (OCF) helps oral cancer patients and their caregivers to get thru some of the most difficult times in their lives with compassionate and correct, up to date medical info. This online community includes members from all over the world all working together to support each other. It takes people who have walked that path before to know what works best for patients and tips on how to avoid pitfalls. We're all in this together!

Previous Stories
1

Advisor

Rating: 5

The Oral Cancer Foundation is an amazing small nonprofit with a worldwide presence. Helping oral cancer patients and caregivers all over the world with up to date, correct medical info and support on the online patient support forum sets The Oral Cancer Foundation apart from other online support groups. OCF's members truly care about each other and embrace new members immediately as one of their own. Nonprofit organizations cant get better than The Oral Cancer Foundation in all areas of helping others. I would give them a 10 star rating for everything they do to bring awareness of oral cancer, helping the general public with free screenings and funding research.

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1

Advisor

Rating: 5

The Oral Cancer Foundation is much more than a spectacular non-profit, but also a home and safe haven to those who have been effected by this disease. Extensive information coupled with a huge online support forum makes this foundation so special and valuable in the cancer community.
OCF's incredible work in sponsoring research, advocacy, public outreach, campaigns, and awareness events set this charity at an enviable and honorable standard. Everyone involved in this foundation from the Executive Director to event volunteers has passion for the cause, all working together to change the course of oral cancer.
OCF is a well rounded and incredible non-profit. I am so privileged to be a part of this dedicated foundation.

1 wilckdds

Professional with expertise in this field

Rating: 5

This organization’s website is the best source of information for patients and caregivers that are going through diagnosis, treatment and the post treatment for oral cancer. In addition, support and answers to questions can be obtained through the use of the extensive online support forum.

Previous Stories
1

Advisor

Rating: 5

After being diagnosed with tongue cancer in 2005 I started searching the internet for additional sources of information on Oral Cancer. I was fortunate to find The Oral Cancer Foundation which proved to be the most comprehensive and informative website on the internet.

Not only does this organization provide hundreds of pages of information, it also has a forum for patients and care givers to share their stories and get personal support from those that have been there.

At the time of my diagnosis I was a practicing dentist. (I am now retired) Through the OCF I have developed life-Long relationships with other survivors all over the world and I have been able to share the knowledge I have gained from the OCF with others. To this day every year I lecture to a class of senior dental hygiene students as part of their program. I share my story with them and turn them on to the OCF for information that they will be able to use to save lives.

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2

General Member of the Public

Rating: 5

In 2006 at age 50, my life was a freight train; roaring forward, very fulfilling & busy. I was 50, felt like I was 30, worked like I was 20. Then, my freight-train life ran head-long into a brick wall.

The "toothache" I'd sought treatment for was stage IV cancer in my jaw. Aggressive, very poor prognosis, and treatment, if successful, would be life-changing. Disfiguring, horrible suffering during treatment, with only slim chances of survival for more than a year or two afterwards.

I've always been a cautious optimist, but there seemed to be very little to be optimistic about. Very low survival rates, horrific treatment modalities, nothing about it sounded in any way appealing. Did I really want to go through that? Was there any POINT in going through that if all that would happen is a short extention of my life, filled with even more misery? I knew next to nothing about oral cancer, and I was terrified.

I knew I had to get to know my adversary, intimately, if I was going to fight. It didn't take long before I stumbled across what would become an integral, important, engaging source of understanding, advice & enormous compassion & encourgement; the Oral Cancer Foundation.

From the first moments, I became part of the OCF "family", and they became a part of mine. Within hours, I was talking to people about my deepest fears and feelings; total strangers earlier, and now close confidants.

It's been said that the only person who TRULY understands what a cancer patient goes through is another cancer patient. Even more important, if that other cancer patient suffers(ed) from the same type of cancer.

The OCF gave me the most important part of the "survival equation", and the part that was missing; the OCF gave me HOPE. I learned and came to appreciate that even with the odds stacked very much against me, many others had travelled that same road, and come out the other side, intact and able to live life.

The year that followed was horrific. Surgery...17 hours worth...a heart attack, a coma for two weeks. Radiotherapy, chemotherapy for months. sicker than I'd ever been in my entire life. Then physiotherapy, speech therapy, scans, tests, ad nauseum. Through it all, my "family" with the OCF was there for me every step of the way. Offering suggestions, encouragement, empathy. Strategies on overcoming some of the difficulties I had. There too, when one of our "family" lost their battle. We grieved together, we celebrated together...we were, and are "family". Some of my closest friends in the world are people I've met through OCF.

The Oral Cancer Foundation is a modest group of people helping one another deal with a common enemy. Together immeasurably stronger than each person indivudually. Their good work continues, and the demands increase, year after year. This organization has participated and played a hugely significant role in improving the survival rates for Oral Cancer around the world. I can think of no more worthy a cause than this.

1 JaneP

General Member of the Public

Rating: 5

My husband was diagnosed 3 times, with different oral cancers, first in 2002, another a couple years later, and a cancer on his lip in 2005. They were all undifferentiated, and contained, so he never had radiation or chemo, but instead, extensive surgeries removing a few teeth, jaw shaving, tissue, and some lymph nodes (that were not cancerous). He has had good check-ups since then. I am writing because he asked me to. The Oral Cancer Foundation and its forum were a God-send, with some of the most helpful, kind people you could ever hope for. It made a world of difference to talk to people who had experience with this disease, who could offer advice and comfort at a time when it was badly needed. I wish I could give the foundation more than 5 stars, because they truly have helped more people thru probably the worst times of their lives.

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3

General Member of the Public

Rating: 5

The OCF is a vital connection for people who find themselves with the numbing news of having oral cancer. It is a lifeline to offer hope, advice, empathy, friends, and to answer the infinite questions, repeatedly, to those diagnosed. There have been invaluable friendships formed among people who have lived through the treatments together and have shared their experience with newcomers. There are truly some "angels" in the forum who have guided the members for years, putting in more time than a full time job, to assist folks through the process of getting to "the new normal". OCF is a Godsend.

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Angelia R.

Client Served

Rating: 5

When I was going through Oral cancer, the Oral Cancer Foundation was a big help to me. I am currently a survivor of 8 years. I know OCF will be there for me if and when I ever needed anything again.

3

Volunteer

Rating: 5

At the age of 46, I was diagnosed with HPV related oropharyngeal cancer, and I was stage 4. As a Dental Hygiienist, I had the background to be able to research this insidious disease, which helped to abate my fears. The Oral Cancer Foundation proved to be the most credible resource for me, by providing me with the most current studies, and information. I am so grateful for all the funding they are able to contribute to relevant studies, and the raising of awareness. Moving forward, now that I am over 3 years post-treatment, I send many newly diagnosed patients to the OCF website. I am so happy to be an advocate for raising awareness about this epidemic!

1

Client Served

Rating: 5

The Oral Cancer Foundation is what pulled me thru my battle with oral cancer several years ago. I dont know where I'd be today without their guidance. Oral cancer is not a widely known disease. I never heard of it before I was diagnosed. The compassionate support members give other can not be replicated. This website helps oral cancer patients and caregivers from all over the world. I wish there were more websites that modeled this great organization. Two thumbs up!!!

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3

Client Served

Rating: 5

When I was first diagnosed with oral cancer I had no idea what it was. The Oral Cancer Foundation's members embraced me and taught me everything I needed to know along with providing me with the emotional support I needed. OCF is a small organization that provides worldwide support for oral cancer patients and caregivers. I consider OCF to be the very best nonprofit out there!!!!

1

Professional with expertise in this field

Rating: 5

The Oral Cancer Foundation is the very BEST small nonprofit organization!!! The OCF online patient support group helps patients and caregivers all over the world with up to date and correct medical info and support. This nonprofit establishment also helps fund many cutting edge research projects. For example, some are dedicated to furthering knowledge of HPV which is the fastest growing segment of newly diagnosed oral cancer patients. The Oral Cancer Foundation has created alliances with dental offices across the US to do thousands of free oral cancer screenings every April for Oral Cancer Awareness Month. This helps to find oral cancer early when its the easiest to treat.

2

Client Served

Rating: 5

My husband was diagnosed with tongue cancer in 2007. I literally don't know how we would have made it without the oral cancer foundation. We were lost as to how to proceed and the oral cancer foundation gave us the tools to navigate the choice of treatment. After treatment we turned to OCF for advice on nutrition and issues with swallowing and feeding. Because of radiation, my husband had to have his jaw replaced last year. The advice of OCF was instrumental in both of us surviving both physically and emotionally. I can't say enough good things about these incredible people. They deserve 50 stars as far as I'm concerned.
Mary and John McCloskey

3 StefH

Client Served

Rating: 5

I was diagnosed with an HPV+ oral cancer that had to metastasized to one lymph node in March 2017. The Oral Cancer Foundation provides an outstanding *moderated* board by other cancer survivors.

Using the board I:
- Selected a certified cancer center 4 miles from my house by late March 2017
- Chose surgery + radiation rather than radiation + chemo by May 2017
- Learned "best known methods" from previous patients - I did NOT need a feeding tube, I ate solid foods until my 6th week of radiation, and I did not have significant weight loss.
- I had very little skin damage compared to most patients (for example, my skin did not peel despite 30 radiation treatments.)
- Followed my speech and swallowing exercises to the letter and did not lose any range in how far I could open my mouth and had no loss of function in speaking.
- Was able to get feedback on questions as they occurred.
- Was given realistic expectations from former patients (e.g. taste loss, salivary gland function) that was glossed over by the doctors.

I highly recommend the Oral Cancer Foundation for anyone with oral cancer and their support.

2

Client Served

Rating: 5

The best thing about the non-profit is that they provide a moderated forum. This prevents information that is inaccurate or misleading from confusing you at a very difficult and confusing time at your life. OCF is the place I could count on to get quick and accurate answers to our questions during and after treatment.

2 Donna79

Client Served

Rating: 5

There is absolutely no question about whether I would be here now if not for the Oral Cancer Foundation. I would not be. It is now 12 years since my first oral cancer diagnosis and not a single day goes by that I don't feel grateful to OCF for their support, the friendships made and the ongoing help that I know will instantly be there when I need it. That help may come in the form of high quality information with the latest techniques and information on procedures front and center, or it may be a shoulder to cry on in the patient and survivor forum. One never really 'gets over' oral cancer. We live with it every single day - in our speech - in our eating abilities (or inabilities) - in our relationships - and in the long term effects of some of our treatments. Not one day has ever gone by that I could say I was "over" oral cancer, and the Oral Caner Foundation has been there with me for every step of the way. My OCF name is "Pandora". I chose that because Pandora's box ended up with just one thing in it - HOPE. To me that was where I was at when I joined - HOPE. I continue to HOPE - for myself and all oral cancer warriors.

Previous Stories
1

Client Served

Rating: 5

In 2004 I was diagnosed with tongue cancer. This was a disease that NO ONE had ever heard of at the time - myself included. Yes, I was a smoker, and I was always fearful of lung cancer - but Oral Cancer?? Who had ever heard of that. I felt lost. Alone. The Oral Cancer Foundation became my source of information and comfort. There I met the most amazing people who knew of what I spoke.

When I was diagnosed with a recurrence in 2007, not one person on OCF gave me the sad "puppy dog eyes" or exhibited the "oh you poor thing" which went with said puppy dog eyes. They walked with me - helped me to find factual documentation and look at some care which perhaps wasn't the norm at the time. Due to my OCF Family's suggestions, I pushed for a second course of radiation and my Radiaiton Oncologist stretched protocols at the time to offer this.

Because of this double radiation I am here today. I just had my 5 1/2 year CT post treatment for my Second bout of Oral Cancer and I am 9 1/2 years past treatment for my First oral cancer. No question I would not be here without OCF.

While my cancer was likely due to the more traditional (old school) reasons for Oral Cancer - i.e smoking and drinking alcohol, I have come to be educated and extremely concerned about the rising rates of Oral Cancer due to HPV. This type of cancer appears to hit young people hard and it breaks my heart to think that they could have likely been cured - IF they had known to seek early detection; IF they had known Oral Cancer even existed.

OCF has work to do and it diligently doing anything and everything it can to spread the word. In order to do this - and save many young lives - they need our support.

The Oral Cancer Foundation is THE BEST Non Profit I have ever heard of. No questions about that.

Thank you OCF for my Life. Thanks to you, I fully expect to see my 60th Birthday in March 2014 :)

Donna Butcher

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