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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

Donor

Rating: 5

This small organizations dedication to always provide facts that are science based is commendable.  I highly recommend the Oral Cancer Foundation to patients and caregivers who are dealing with oral cancer diagnosis, treatments, and recovery.  Other organizations should strive to emulate this outstanding organization in every way.  The Oral Cancer Foundation operates on a tight budget to make the most of every donation received.  Please consider giving this organization your donation. 

2

Client Served

Rating: 5

THE ORAL CANCER FOUNDATION IS THE VERY BEST NONPROFIT IN THE US!!!!  They have helped me tremendously with so many things my medical team hadnt told me.  I always learn something new every time I go onto their website.  The Oral Cancer Foundation is the best of the best, they deserve 10 stars!!! 

1

Client Served

Rating: 5

The Oral Cancer Foundation was one of the best resources when my mother was diagnosed with oral cancer.  Neither my mother or I knew anything about oral cancer.  All the members are so knowledgeable and freely share their experiences with those who need their wisdom.  The Oral Cancer Foundation has an abundance of warm, caring members who immediately embrace every new person.  To me they're the BEST!!!!  Thank you for helping us and we will in turn help others who are just starting out.

1

Client Served

Rating: 5

My husband fought this disease for four years. During that time we found the most up to date and reliable information at this charity. People in the support group helped us almost daily, through all the ups and downs of his battle. Even the founder of OCF spent hours with us on the phone over many conversations, helping us understand treatment options, and when the conventional ideas did not resolve things, new ideas in immunotherapy that were only in clinical trials. He helped us get enrolled in one. For almost a year things looked bright and the disease seemed to retreat. But ultimately it was stronger than any treatment and this year we lost him. While our story is not the bright cheery post that I read here, I came to say that OCF stayed with us, helped us understand, helped us find new ideas to try, and ultimately mourned with us when it was over. They never asked for anything from us, they were just always there when we needed them, even on holidays when things turned suddenly south. I can’t donate to them, we are not financially capable, but in 2020 I will work with them to set up a fundraising walk in my hometown to raise money. To memorialize my husband, and to raise funds for those who were there for us. If you can donate, this charity is the real deal. Not some giant in size, but with a giants heart.

1

Volunteer

Rating: 5

I have been part of this foundation's work for many years. I have watched them grow from a seed of an idea, to a highly impactful and well run national organization. After having this cancer and surviving; and later thriving, I wanted to give something back. The place to do that was obvious. During my journey this organization had a support group online that was the only thing like it, not just in oral cancer but in cancer in general, they were way ahead of the Internet curve. I found people like me there, and the peer to peer conversations helped me see what was ahead of me on my path. But the richness of the website content, and the details which it went into, also gave me the knowledge I needed to help make good informed decisions. They have been at the forefront of the HPV and oropharyngeal cancer issue since the link between the two was discovered, and have financially supported core researchers in this area and disseminated tons of information about it in the public arena. An educated public can find ways to have their children side step having this disease impact them. Bottom line there isn't another organization that reaches this bar of accomplishments in the head and neck / oral cancer world. I will continue to attend their walks, advocate for them in my industry (dentistry) help with their support group, and make them my charity of choice for donations, as they are a life changing organization.

1

Client Served

Rating: 5

I am a long-term survivor of a stage four oral cancer. I have been engaged with OCF since my early days right after treatments when I was having difficulty with swallowing speaking and all the aftereffects that those who have been radiated know about. The people, web site, and support group at OCF were instrumental in keeping me informed, and understanding work arounds for some of my most difficult problems. I was even able to call the founder of OCF on a personal line and discuss issue with him as he has been out of the lecture circuit talking about the disease and is highly informed and connected to others in the oral cancer world that might offer me assistance. Ten years have elapsed since those days. Today I have new problems that many of my doctors do not know how to deal with, all related to my high dose radiation treatments. I again turned to OCF, and again found answers and support. OCF has now been part of my life for a decade and a half when I needed them. They have always come through for me with support and answers, and importantly options that help me make better informed decisions. OCF is not a large entity, and it is significantly underfunded considering the many important things they are engaged in. I used to think that bigger was better. But this organization is now the destination of my donations because they get things in the oral cancer world done, when others with fancy websites have little to show for accomplishments in the oral cancer world. OCF is a gift. I urge others to please donate to them, they deserve to be around into the future.

2

Client Served

Rating: 5

I am a 15 year survivor that is having significant complications from my radiation treatments. No other organization that I have contacted understood the nature of these issues, baro reflex dysfunction, neurological issues and more. Here they get me, they have work arounds to help me, they have spent countless hours on the phone with me, and helped me understand what is happening to my life. Bigger charities had no clue what to do with me, and I rapidly learned that they only are interested in people with one of the big four cancers. Oral cancer without OCF would be an orphan disease when it comes to patient support. This is were my donations now go. They have earned every dollar that I have given them.

2

Client Served

Rating: 5

As a caregiver, most people and organizations do not understand that when someone gets this cancer , the whole family gets it. We have been devastated by my husbands disease, the impact on our family financially, and my personal emotional state as well. OCF understood that, they have not only helped my husband navigate through the maze of treatment options, find workarounds for issues , and ultimately get into an institution that was doing immunotherapy, when his disease did not respond well to treatments, but they have supported me separately through my issues as well. No other organization that we contacted got this. They have spent hours and hours with both of us on the phone, the support group has also helped as has the many pages of useful information on their web site. I don't know what we would have done without them. We cannot afford to donate to them right now but when our lives stabilize in the future we will. We encourage others to look at this small charity as THE place to give your gifts, they are so deserving of your support and deserve also to survive in a very competitive world of non profit charities.

3

Advisor

Rating: 5

The Oral Cancer Foundation (OCF) helps tens of thousands of oral cancer patients/survivors and caregivers day in and day out, every single day and night of the year. Oral cancer does not take a day off and neither does OCF! This organization far exceeds Greatnonprofit's 5 star rating!!! OCF may be a small organization, but it has the biggest heart of all charitable organizations :) They've done wonders on a shoestring budget with furthering important research projects, educating the general public about oral cancer, providing free oral cancer screenings across the US and so many other positive, helpful endeavors. At OCF, the dedicated, caring online forum members go above and beyond to make a positive difference to those struggling with oral cancer. Dedicated and knowledgeable members all pitch in to support each other with important but frequently overlooked info patients have not received from their medical team. This small nonprofit sets the bar so high, its a shining example other nonprofit organizations should all strive to emulate.

Without OCF, I would not be here today. After going thru oral cancer 3x within 3 years it was an uphill battle to get thru it. Luckily I had the Oral Cancer Foundations compassionate members by my side thru the everything, the good days and bad. These people who I never met, perfect strangers from all over the world joined together to support me while generously sharing the info and first hand knowledge of going thru exactly what I was facing. Fast forward 12 years, Im still an active member of OCF. Today Im helping newly diagnosed patients and their caregivers to conquer their fears, do whats necessary to get thru often barbaric treatments along with an extended recovery time. After going thru everything, the last hurdle patients face is reclaiming their pre-cancer lives, which we help with as well.

Previous Stories
3

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!

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2

Client Served

Rating: 5

The Oral Cancer Foundation is the very best charitable organization. If it wasnt for them I dont know how I would have gotten thru the harshest treatments to become a cancer-free survivor. Everyone there is always willing to help me and others with their own knowledge with so many tips all of which my medical team hadnt mentioned .

This group deserves 10 stars.

3

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).

1

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.

3

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.

Previous Stories
3

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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2

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.

2

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

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.