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

When my husband was going through treatment for oral cancer, I spent many nights searching for answers to his condition. I found the Oral Cancer Foundation one night and felt as if I had come home. Here was an organization dedicated to oral cancer and I immediately connected with others going through similar issues. I am so grateful to the OCF for the information,, education and research they have sponsored. The Forum is a group of patients and caregivers available at any time to help when the going gets tough. I have made friends all over the world who are with me every step of the way. I can't thank Brian Hill and his staff enough for the support I have received. It has helped me get through very difficult times. Today, I give back by donating to this worthy organization in the hopes that I might help someone else as I have been helped.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

 
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1 previous review
Rating: 5 stars  

2 people found this review helpful

My husband is an oral cancer survivor and I am his caregiver. I found the Oral Cancer Foundation during a particularly difficult time in my husband's treatment. The support I received from the Forum and the comprehensive information on the website were lifesavers for me. I have learned so much about this disease and so much appreciate what Brian Hill has created. There is no other site like this for those affected with this awful disease. I have made lifelong friends from the OCF Forum, many of whom I have met at the Awareness Walks. I consider myself a volunteer in that I support others in the Forum with the my experience of OC, and I give generously to the cause as I believe that awareness and prevention are key to a healthier future.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

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.

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

Provide unlimited funds.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

 
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1 previous review
Rating: 5 stars  

3 people found this review helpful

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.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

I found OCF while recovering from treatment for Stage IV Squamous Cell Carcinoma, BOT in 2003. I have met many people that have or will experience the complexities of treatment and the brutality/toxicity that brings with it new challenges. OCF is not only a community of survivors and caregivers but the most informative site for all facets of oral cancers.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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1 previous review
Rating: 5 stars  

26 people found this review helpful

When I was diagnosed with Stage IV Oral Cancer in 2003 my life changed and honestly, it has not stopped changing. I have yet to find my "new normal" as we call it. I became active on the forums that were provided by the Oral Cancer Foundation and met literally thousannds of people that had experienced pretty much the same thing as me only with personalized time frames. As trite as it may sound, I don't know how I would have made it to where I am today without the resources, the friends and the incredible website Brian Hill self-funded to start it up. I go to Health Fairs and represent the Oral Cancer Foundation and if I was in a little better health presently, I would be organizing a walk to raise money during Oral Cancer Week next April.

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

Bringing people from all over the world to one place that is the singlemost comprehensive resource website for oral cancer as well as providing a place where hundreds walk through the cancer journey with you, letting you know what is around the corner.

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 tenacity of Brian Hill and how he singlehandedly made this happen with hundreds of thousands of dollars out of his pocket to promote early detection which increases your chances of survival from 25% to 90%.

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

Incredibly devoted to helping people with this horrible disease and willing to put in the hours needed for nothing in return, monetarily.

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

Reduce the death rate of oral cancer significantly. In addition, more research could be directed towards early detection and treatment alternatives.

Ways to make it better...

Brian Hill had an entire staff instead of an army of one for so long and financial backing.

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

The low incidence rate of oral cancer versus breast cancer, for example. It is hard to fund and support groups that are trying to get the word out on early detection and keep up with treatment technology when there are only 35,000 "victims" a year.

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

My life was transformed by finding the Oral Cancer Foundation.

When was your last experience with this nonprofit?

2009-7-01

 
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Rating: 5 stars  

2 people found this review helpful

As a Dental Hygienist, The Oral Cancer Foundation is invaluable to me. Just this week a patient was diagnosed with Oral Cancer. Our office was able to give the family a packet of information, that will aid them enormously during this time. It was all taken from The Oral Cancer Foundation website.

The Oral Cancer Foundation allows dental professionals to stay educated on the latest research and information on Oral Cancer, and pass this on to our patients. Because of OCF sponsoring April as Oral Cancer Awareness month, and supporting offices nation wide, as they offer free Oral Cancer screenings during the month of April, we are able to reach the local community and provide screenings to those who might not other wise receive a life saving screening.

Additionally, the OCF awareness events held across the country throughout the year, provide another avenue to reach out to the local community in raising awareness and providing screenings.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

2 people found this review helpful

When my husband was diagnosed it was terrifying. We had so many questions and so we searched the internet. When we found The Oral Cancer Foundation, not only did we find answers to our questions, we found a family that included others battling along with us as well as many folks who had fought the battle and won, but were still on the forums to help others get through treatment. It was an amazing gift to me, the caregiver, especially. I felt very alone prior to finding the forums. Nobody really understood what I was going through, or they didn't care to hear it as it scared them too much. On the forums I found support.
Thank you Oral Cancer Foundation!!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

My husband was diagnosed with oral cancer in July of 2011. We completed treatment at the end of October, which is just about the time I found the forums of the Oral Cancer Foundation. It was such a blessing to have so many people understand exactly what I was going through as a caregiver. I found this awesome support system that helped us get through the next couple of months after treatment ended. Any questions I had someone had an answer because they had been through it. Just wonderful!Thank you so much OCF for providing such a valued support for us.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

2 people found this review helpful

I was 33 years old when I was diagnosed with StageIV metastatic Oral Cancer. The treatments and surgeries that saved my life however left me disfigured, disabled, and dependent on the opiate pain medication Fentanyl. I felt lost and alone, without hope. I found the Oral Cancer Foundation's Online support forums 11 months after diagnosis and it was a ray of light for me. I was able to connect with survivors and other patients who understood my struggle and relate to where I was at. With their advice and support I've been able to rebuild my body and free myself from the opiates, and begin to live again. I can't express the gratitude in my heart for the Oral Cancer Foundation or the Angels of mercy who are the staff and volunteers that spend their time helping those in need.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

1 person found this review helpful

My mom has tongue cancer. She has been treated for it twice - Stage 1V bot times. The treatments have been just brutal but she has gotten through them. I know she has gotten alot of information from this website and made friends from it. It has given her alot of ideas about what to expect and what questions to ask the doctors.

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

My mom seems to get alot of good information from the site. I know the last time she had cancer they were not going to do radiation again, but she read something about getting radiation more than once on that website, and they considered it and did it.

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

Tell people not to smoke and not to drink diet drinks. I firmly believe that these two things were what caused my mom's cancer. I think there should be more information available about tongue cancer. No one had ever heard of it before my mom got it.

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

I think my mom gets alot out of belonging to this group. That has made things easier for my dad. I no longer live at home so he has done most of the taking care of mom.

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

Tell people what the dangers and risks are for tongue cancer are. I also think they should fund a study of the link between diet drinks and cancer.

Ways to make it better...

I would have liked to know and still would like to know what Stage 4 means. My mom seems to be doing okay right now - she is very very tired and can't speak. When I told my friends that my mom's cancer was Stage 4 they were very scared for us all.

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

Telling people what the dangers are and how to avoid what my mom has gone through.

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

This cancer has changed all of our lives. The effects on my parents as well as my brother and I have been huge. I wish things were the way they used to be.

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've been a smoker for 8 years now and it's probably the hardest thing I've had to endure throughout my hardships with life. Although I had quite for 2.5 years straight, I find myself today still lighting up. Each morning I wake up and cough for about a good minute, which is no way to start off your day. Since my personal friend Megan Cannon at OCF has informed me about the risk to my health, and her extreme concern for every individual that is putting themselves at risk from smoking, she has giving me the will to cut back and be more aware of how much I smoke. Today I am down to 4-6 cigarettes a day (sometimes more, sometimes less) from my 1 pack plus a day. Megan is perfect for OCF and their cause. Not only has OCF helped me, but through watching Megan inform and help so many others (people all alike) she has helped me to live a healthier life. So I want to say Thank You to Megan Cannon and OCF for their support.

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

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

How friendly and informative they are, their level of care and concern for everyones health

Ways to make it better...

I had more real visual examples of the effects of cancer on my body

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?

2009-6-01

 
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Rating: 5 stars  

1 person found this review helpful

Oral Cancer has been and still is one of the orphan cancers. Not many people know that oral cancer kills one person per hour,everyday 24 hrs a day. I did not know this eventhough I have been in dental field for quite some time now. I came to know about this from the facts and stats put together by the oral cancer foundation. That was an eye opener. I came to the OCF web page while I was looking for information to help my sis, when got diagnosed with cancer of oropharynx. The information on this website and in the forums has been great help in going about the treatment and locating the resources. This is my personal experience. and the people at the OCF are amazing, everyone truly wants to help and lower the mortality rate associated with oc by raising awareness and helping people by giving them much needed information. Without the Oral Cancer Foundation there would not have been any awareness about the death rate and devastation it's causing in the world. The OCF has forums are extremly helpful & support those who suffer the burdens of the disease. The Ocf has made the research efforts possible to identify HPV as a cause of oral cancer, I think which is remarkable. OCF is the best source of information & facts about the oral cancer on the web,period. I believe the oral cancer community would be worse off if Brian Hill or oral cancer foundation will not be there to create awareness and inform everyone about oral cancer.

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

many wonderful people's lives,whom I have come to know thru' OCF & in my own life.

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

-The well of information. -Truly helping people.

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 love OCF. It is what has gotten me thru two round of oral cancer. The members are intelligent, caring and just plain amazing!!

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

how the forum members rally together to help each other.

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

Ways to make it better...

oral cancer was eliminated.

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  

1 person found this review helpful

The Oral Cancer Foundation has helped to give my husband new meaning to his life. Since his bout with Oral Cancer he spends a great deal of time helping others that are going through treatment. I know that he greatly values the friendships he has developed with other members of the OCF.

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

how motivated my husband is to help others that have oral cancer.

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

expand the wonderful work that it is already doing.

When was your last experience with this nonprofit?

2009-7-01

 
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