The Oral Cancer Foundation

Rating: 4.98 stars   329 reviews

Issues: Health, Cancer

Location: 3419 Via Lido #205 Newport Beach CA 92633 USA

Mission: The Oral Cancer Foundation is a non-profit 501c3 charity that works to provide information about this disease to the public, 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 22 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.
Results: *WINNER OF THE 2009 CANCER FIGHTERS AWARD FOR SMALL NON-PROFITS* CURRENT CAMPAIGNS Rodeo - Tobacco Outreach - "Be Smart. Don't Start." In 2014 our first rodeo spokesperson joined OCF; Cody Kiser, a young, personable, up and coming bareback bronc rider. Cody and OCF founder Brian Hill began a program of doing interviews at rodeos or by phone after Cody’s competition in the arena with local print media. The message from Hill, an oral cancer survivor, and Cody, a rodeo cowboy that believed in rodeo as a family oriented event where tobacco wasn’t a contributing part of the mix, was simple. Tobacco eventually brings bad things into your life, and you can be a great competitor and cowboy/athlete without it. The foundation worked with photographers to not only capture the excitement of a wild 8 second ride on a horse that wants to put you on the ground, to showcasing the message and branding that Cody wears on his safety vest and shirts into the arena competition. The idea, particularly Cody’s compelling story of wanting to do good in the world while following his passion of traveling to rodeos to compete each weekend, was an immediate success. That human interest story, coupled with facts about tobacco and nicotine addiction, and the dire oral cancer element, was a story that resonated with people. Almost immediately it attracted national attention in venues like the largest print magazine in circulation in America; Parade, to front page stories in local newspapers like the The Idaho Press Tribune and PRC Rodeo. Part of the Change: The RDH community is uniting to be part of the much needed change in early discovery of oral cancers. With their commitment to performing oral cancer screenings and being the first line of defense you have an 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. Together, we can make a difference! Together, we can give oral cancer a voice! If you would like to be part of the change, please email Jamie O'Day - jamie@oralcancerfoundation.org. Oral Cancer Awareness Month - April Oral Cancer awareness in the American public is low. Approximately 43,250 people in the U.S. will be newly diagnosed with oral cancer this year. Dentists 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 is young, healthy, nonsmoking individuals due to the connection to the HPV virus. We cannot stop this virus from spreading; our only hope to save lives is with professional involvement and public awareness. 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.
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
2015 Top-Rated Nonprofit
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EIN 33-0969026
949-723-4400
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

My name is Gerry.I am 51 and got Tongue Cancer in 2000. I have had multiple surgeries on my tongue w/ life altering consequences. I had a recurrence in 2007. OCFoundation has helped me tremendously. The site is a wealth of REAL facts. The news feed is A+. I check in with it weekly to stay updated on this rare cancer. The Drs could not possibly do this for me today. But most important, the support from the others who have endured this awful disease has been too valuable to detail here. One of my very best friends in life I met on this site. We have not met in person yet. But we met here about 4 years ago and the bond I share with her is one of the greatest gifts in my world. I am so thankful to the OCFoundation.

I've personally experienced the results of this organization in...

My knowledge about Oral Cancer and how it is dealt with by other survivors and their families. It is invaluable information in a monitored and safe system.

If I had to make changes to this organization, I would...

Do exactly as Brian Hill has. He is awesome!

What I've enjoyed the most about my experience with this nonprofit is...

My friendship with another survivor that was started on this site.

The kinds of staff and volunteers that I met were...

I have not been able to meet face to face but on line and on telephone, all are terrific and totally professional.

If this organization had 10 million bucks, it could...

Help many survivors to get better and to feel whole again and to get educated about cancer and find ways for themselves to be proactive too and not be pushed around by the system....

Ways to make it better...

I had more personal spend time on-line...

In my opinion, the biggest challenges facing this organization are...

The fact that Oral Cancer does not get the attention it deserves in the media or in funds for research and overall care.. This is a DEVASTATING illness that is not brought out in to the light enough......

One thing I'd also say is that...

I am soooooooooooooo grateful for the Oral Cancer Foundation!

When was your last experience with this nonprofit?

2009-5-01

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Rating: 5 stars  

1 person found this review helpful

I am mainly an in the background type person and I was a friendly caregiver to my boss who had a FT caregiver so I helped out when I was needed. Without this site I wouldn't have understood what my boss or his wife were going through so it was priceless when I needed it. I continue to visit from time to time and I just find the people amazing in their desire to help others that are about to go through their fight with oral cancer. Anyone who thinks or knows they have oral cancer would benefit greatly by logging on to this site.

I've personally experienced the results of this organization in...

the people who post on it

If I had to make changes to this organization, I would...

not change a thing

What I've enjoyed the most about my experience with this nonprofit is...

the tremendous amount of information available and the experienced posters that are always helping others in need.

If this organization had 10 million bucks, it could...

funnel that money to the most worthy research projects available

Ways to make it better...

my boss would not have had cancer

In my opinion, the biggest challenges facing this organization are...

One thing I'd also say is that...

great great site

When was your last experience with this nonprofit?

2009-7-01

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Rating: 5 stars  

1 person found this review helpful

I found the OCF site 15 years after I was diagnosed and treated for squamous cell tongue cancer. My diagnosis had come as a complete surprise, as I had never smoked and had been told by multiple doctors that I was not at risk for oral cancer. Long after my experience with it, I was actually looking for good resources for a couple of friends who had been recently diagnosed, and was amazed at the amount of current, relevant information that OCF had to offer -- far beyond what I could find on other cancer-related sites. If anything like this had existed when I was undergoing treatment, it would have been an enormous help and support to me. As someone who went through major oral surgery and weeks of radiation without the benefit of OCF's support network, I can appreciate how much this site can provide to someone facing this disease.

I've personally experienced the results of this organization in...

the way it has allowed people from all over the world to share their questions and their experiences with oral cancer and to strengthen their resolve to fight it.

The kinds of staff and volunteers that I met were...

unselfish, and deeply concerned about the problems of those on the forum who needed to 1) get an accurate diagnosis, 2) make an informed decision about treatment, and 3) deal with the pain and other side effects of battling this illness.

If this organization had 10 million bucks, it could...

do an even better job of helping more people to recognize the early warning signs and hopefully get a timely diagnosis to improve their chances of long-term survival.

When was your last experience with this nonprofit?

2009-1-01

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Rating: 5 stars  

1 person found this review helpful

I joined the OCF Survivor Forum in November of 2002, well before my treatment started, and the members of the forum there, and also information on the main site, helped me in ways that are unmeasurable. I have made many friends in all areas of the world and stay in touch with many of them to this day. Back in November of 2002 there really weren't any other oral cancer sites like OCF and there still isn't today. I have been honored to give back on the forum, what was so freely given to me. It has been a life altering experience for sure. I am certain that advice that I received there has helped me to survive the horrors of cancer treatment and it's aftermath. I have 6 years of being cancer free today and OCF was a major part of that. Conversely, it saddens me that I have lost so many friends to this horrific disease.

I've personally experienced the results of this organization in...

feedback frrm people that have been helped.

If I had to make changes to this organization, I would...

go crazy fighting an uphill battle all of the time for funding.

What I've enjoyed the most about my experience with this nonprofit is...

the diversity of people and cultures and the commonality of our plight.

The kinds of staff and volunteers that I met were...

compassionate, caring and dedicated to serving others.

If this organization had 10 million bucks, it could...

fund basic cancer research.

Ways to make it better...

less people had died.

In my opinion, the biggest challenges facing this organization are...

finding the funding to keep it alive.

One thing I'd also say is that...

The forum has grown by over 6,000 members since I joined.

When was your last experience with this nonprofit?

2009-7-01

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Rating: 5 stars  

1 person found this review helpful

I found the Oral Cancer Foundation 2 years after my diagnosis. When I finally found the site it changed my life. Talking to people on the survivor/patient forum made me realize, not only are there thousands of people going through the same thing, it made me realize I could actually someone. I was lucky enough to actually meet some of the people in person and I feel blessed to have done so.

What I've enjoyed the most about my experience with this nonprofit is...

Talking to other people on the survivor/patient forums. It has changed my life in ways I cannot describe.

When was your last experience with this nonprofit?

2009-7-01

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Rating: 5 stars  

1 person found this review helpful

As a two time SCC oral cancer survivor diagnosed in 1997 and 2001, I can tell you I know the fear of going this road alone as there were no support groups out there for this kind of cancer. I joined the OCF in May of 2001 and have been seen the help that this charity brings to both patients and caregivers and their families. It has even managed to save a few lives but stopping a caregiver from cutting pain patches or getting someone to the ER in time. Here are a group of compassionate, well informed people who have been down this road and are willing to help you on your journey. Besides the marvelous forum, there is a large resource section on the web site wityh information on oral cancers, its treatment, side effects, dental issues, best hospitals, etc. and two search engines to help you fins what you need. There are lasting cyber friendships formed on the forum and the emotional suppsort is beyond my words. I never knew how much my cancer had affected my husband until we flew to Vegas to meet twenty some other patients and caregivers. He came home knowing he wasn't alone in his fears abd feelings and a much calmer man. Meanwhile, the founder of this charity, is out beating the bushes at conferences and government agencies to get better funding for this cancer and to get the word out that 'EARLY DETECTION SAVES LIVES'. One of the best charities going.

I've personally experienced the results of this organization in...

helping both caregivers and patients through this horrible journey by sharing information on side effects, both emotional and physical.

If I had to make changes to this organization, I would...

I would hire or find an effective fund raiser to find a corporate sponser to pay for the website. Many of the expenses of this charity are funded by the founder.

What I've enjoyed the most about my experience with this nonprofit is...

is being able to help others from my experience. If I can at least that fear of the unknown, I feel I have helped.

The kinds of staff and volunteers that I met were...

most dedicated, compassionate I know. They are also very well informed.

If this organization had 10 million bucks, it could...

sponser more research into causes and cures. So many oral cancer patients die unnecessarily because they are misdiagnosed. With HPV now a facter and even teens having oral cancer, doctors need to realize this is no longer an old man's disease.

Ways to make it better...

had this organization existed whne I was diagnosed.

In my opinion, the biggest challenges facing this organization are...

fund raising.

One thing I'd also say is that...

It is too bad that all cancers do not have a website like this. The forum format is the best I have seen. Sites like this should receive some government funding.

When was your last experience with this nonprofit?

2009-7-01

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Rating: 5 stars  

1 person found this review helpful

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.

If I had to make changes to this organization, I would...

What I've enjoyed the most about my experience with this nonprofit is...

The total quality of information presented for Head and Neck Cancer patients. One can learn what to expect from various treatments, ask questions, and receive suggestions for questions to ask their own doctors

The kinds of staff and volunteers that I met were...

professional, straight forward and willing to share their knowledge and experience.

Ways to make it better...

I had found this organization earlier in my own treatment

In my opinion, the biggest challenges facing this organization are...

One thing I'd also say is that...

When was your last experience with this nonprofit?

2009-7-01

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Rating: 5 stars  

49 people found this review helpful

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.

I've personally experienced the results of this organization in...

advocating the importance of early detection of oral cancer.

If I had to make changes to this organization, I would...

try and continue the extraordinary committment and professionalism of Brian Hill and the OCF's team to providing relevant, important and accurate information about oral cancer..

What I've enjoyed the most about my experience with this nonprofit is...

the sense of community that has developed over the years with other cancer survivors.

The kinds of staff and volunteers that I met were...

professional, knowledgeable, compassionate and dedicated.

If this organization had 10 million bucks, it could...

sponsor free screening, particularly in disadvantaged communities. Oral cancer affects minorities more than whites. Supply clinics and other public health organizations not only with training but also equipment like Velscopes and other detection devices.

Ways to make it better...

There's no way I could have had a better experience.

In my opinion, the biggest challenges facing this organization are...

generating enough funding to promote their campaigns for regular checkups, prevention and early detection.

One thing I'd also say is that...

I've volunteered for a number of non-profits. This is the most efficient, dedicated and compassionate one that I've come across.

When was your last experience with this nonprofit?

2009-7-01

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Rating: 5 stars  

1 person found this review helpful

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.

I've personally experienced the results of this organization in...

more people knowing about this type of cancer. New members finding help and finishing their very difficult treatments.

If I had to make changes to this organization, I would...

not change one thing. Brian Hill has created a wonderful organization that helps so many and spreads correct info about oral cancer.

What I've enjoyed the most about my experience with this nonprofit is...

the forum gives so much support to people who need help.

The kinds of staff and volunteers that I met were...

the best people in the whole world. They are so kind and caring and reach out to help others when they need a hand.

If this organization had 10 million bucks, it could...

help find a cure for oral cancer and make doctors and dentists aware of what to look for. All patients would be checked when they have a dental exam or even a physical.

Ways to make it better...

there was more money dedicated to helping OCF and oral cancer patients. Of course the ultimate goal would be to cure this disease so others wouldnt suffer.

In my opinion, the biggest challenges facing this organization are...

not enough money.

One thing I'd also say is that...

OCF is the best place for any oral cancer patient to find help and info.

When was your last experience with this nonprofit?

2009-7-01

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Rating: 5 stars  

2 people found this review helpful

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.

I've personally experienced the results of this organization in...

raising awareness so that people are getting tested and dental offices are now informing patients of their options.

If I had to make changes to this organization, I would...

try ot get even more people involved.

What I've enjoyed the most about my experience with this nonprofit is...

seeing the passion in making a difference in people's lives.

The kinds of staff and volunteers that I met were...

all willing to do whatever was needed to promote the cause.

If this organization had 10 million bucks, it could...

help end new cases of oral cancer. With early detection we can stop oral cancer.

Ways to make it better...

I was able to secure more donations for OCF.

In my opinion, the biggest challenges facing this organization are...

generating enough funds to put towards public awareness campaigns.

One thing I'd also say is that...

When was your last experience with this nonprofit?

2009-7-01

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