The Oral Cancer Foundation

Rating: 4.99 stars   338 reviews

Address:

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 CANCER FIGHTERS AWARD FOR SMALL NON-PROFITS* Oral Cancer Awareness Month – April Oral Cancer awareness in the American public is low. Approximately 45,750 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. 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 early 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. If you would like to be part of the change, please email Jamie O'Day - jamie@oralcancerfoundation.org.

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.

2015 Top-Rated Nonprofit
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More Info

949-723-4400
http://www.oralcancer.org

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Reviews for The Oral Cancer Foundation

Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

I found the OCF website after my daughters second recurrence of oral cancer. The knowledge, information and support that I have gleaned from the Oral Cancer Foundation and members has been immeasureable to help understand the foe we were up against. The news does have to get out about this dreaded disease and the aftermath of side affects and disruptions to peoples lives. Go OCF, spread the word.

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

the information and support that it supplies to oral cancer victims, survivors, caregivers and families.

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

Make sure that Brian Hill continued to run it as he has. He has done a wonderful thing when he started this organization as he finished his round with oral cancer. Go Brian you're doing a wonderful job.

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

Accessibility and availability of response and support of individuals from the organization and forum.

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

Only met them online, but wonderful and supportive.

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

Go a long ways in trying to even find a cure for this disease. Start an organization of source/resources for assistance monetarily for the victims of cancer as losing a job and paying bills is very tough as you're fighting for life.

Ways to make it better...

I had found out this information during our first round with this disease.

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

Money to get more information and understanding out there.

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

This is an extremely debilitating disease as you are going through the treatments and side affects, more people need to understand and have compassion.

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 am 45 and female No one can describe the treatment for oral cancer and its terrible side affects unless you have been there. i was devastated at the end of my treatment. I had no saliva which to others does not sound to much of a price to pay for your life but you can not talk, eat or stop gaging along with my neck all sunken in and the burn marks on my face from the radiation i went into depression with severe panick attacks. Tonsil cancer is rare and i was given no support from local organizations. no one at my doctors surgery had ever been diagnoised with this cancer. i began to search the internet for other suffers and found The oral Cancer Foudation. i found other suffers and was able to get excellent advice on how to live with the scars and various side effects. The people were fantastic. without them i really dont think i would be here today. There are plenty of cancer charities but oral cancer and head and neck cancers have very little support. You feel totally on your own. The site is easy to use when your brain is all over the place and the advice is quick and caring. i am 2 years 5 months post treatment and do not visit the site that often now as it brings back awful memories when i read patients stories. i have regained some of my life back but have to constantly work at keeping the depression at bay. i hope to one day get my old self back and be able to help others like they helped me. but for now i am trying to keep my mimd on other things. Please recogonise this foundation for the great work that it achieves.

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

only on the internet

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

try to set up local support groups where sufferes could meet

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

other peoples experiences and thier advice

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

I never met the staff. i only had advice from the web site.

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

set up support groups at more hospitals. supply information booklets on how to cope after treatment ends

Ways to make it better...

It could not be better.

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

I dont know as i was extremly ill at the time and used them purely for my own benifit

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

When was your last experience with this nonprofit?

2009-5-01

 
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Rating: 5 stars  

1 person found this review helpful

My beautiful young daughter (age 43) fought and finally succumbed to this dreadful oral cancer. Throughout our 2-1/2 year ordeal of surgeries, chemo's & radiations I sought advice and comfort at the Oral Cancer Foundation site. I don't know how I would have made it without the wonderful people who answered my ever question & guided me through the long terrible days and nights. I am now honored to offer my help and support to those who continue to fight the valiant fight against this horrible nightmare of a disease with my experiences. The Oral Cancer Foundation is a multitude of angels waiting here on the internet to hold your hand!

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

providing unending support to those going through cancer

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

the online friends made and the heartfelt support

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

help in the research toward finding a cure for oral cancer

When was your last experience with this nonprofit?

2008-9-01

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

I found the Oral Cancer Foundation website after I had been diagnosed with tonsil cancer. I had just had a preliminary visit with a radiation oncologist. When I saw him, I really knew nothing about the disease and its treatment. By the following week, when I had a preliminary consultation with the medical oncologist, I had learned a great deal about the the disease and treatment protocols. I was able to ask intelligent questions and could make an informed decision about ;the drug to be used in the clinical trial I enrolled in.

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

the access to current medical knowledge about oral cancer and the vast searchable comments and questions from other oral cancer patients.

When was your last experience with this nonprofit?

2009-7-01

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

When I come to the Oral Cancer Foundation, I was scare, confused and had so many questions. The people at this site helped me so much, They told me the truth and let me know what to expect, they put my mind at ease and helped me get thur it. I looked around before coming here and found this site had the most complete information, that was easy to find and understand. 67 year old female, Oral cancer, in chin and gum area. 39 Radiation and 8 Chemo treaments.

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

the people and the way they let you know that it will get better.

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

very helpful, alway told the truth. This was very inportent to me, because, The doctors was not telling me all and it was causeing me to worry. I can deal better if I know what I'm dealing with.

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

grow and help more people.

When was your last experience with this nonprofit?

2009-7-01

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

CANCER! What a horrible word. Although I was surrounded by a caring loving husband and family, I felt all alone. I had been diagnosed with tonsil cancer. Following 7 weeks of radiation, with one day each week of chemo, my treatments were complete. I was left with fear, doubt, and questions concerning my type cancer. This was all new to me. Then, thankfully, I discovered the Oral Cancer Foundation web site. How wonderful to know there was a place to go where you actually could correspond with others who had been through practically everything you had in dealing with the disease, but also dealing with the treatment and after effects. It is a privilege to know others have experienced mostly the same things I have, and at least I feel NOT ALONE. GOD BLESS everyone who is part of this wonderful site and I hope it continues forever! Julieann

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

helping me cope with the many questions I had concerning my treatment side effects

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

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

Hearing and learning that I AM NOT ALONE

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

So very informative

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

Keep helping others "forever."

Ways to make it better...

Maybe give more instructions on how to input information for those, like me, who are computer illiterate :(

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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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

My first bout with cancer was 2004, then 2005/2006 I found Oral Cancer Foundation in April of 2006. I was so thankful for this site. It helped me to understand what I had been through, & learn more of what was to come. If it was not for OCF I would be scared to death!! Instead I am well informed and supported by others. I also have the chance to give back to others as well. I encourage anyone with Oral Cancer to contact OCF for good information and support. I am proud to be a Member of OCF.

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 support of everyone.

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

Have not met, but have heard from.

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

Reach out much farther !! Help many more cancer patients!! Also more research.

Ways to make it better...

I had found this organization sooner. I would have learned about my cancer and what to expect.

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

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

OCF is the Best and deserves the 10 million!!

When was your last experience with this nonprofit?

2009-1-01

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

This was such a helpful site for me to find out in a nonthreatining way what I was facing after my diagnosis. I didn't have all the symptoms but when they did arrive, I knew what to expect and they let me realize that there was light at the end of this long, dark tunnel. It's great to know that you are not alone in this fight and that others have gone before you and survived and are willing to share their pain and triumphs with everyone.

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

the awareness generated for this disease and the "handholding" that they give to all who are afflicted with it.

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

spread the word to more people with this disease.

When was your last experience with this nonprofit?

2009-5-01

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

I found the Oral Cancer Foundation to be the most valuable source of information. Information is current and factual. Far more so than traditional patient referred informational sites. Such as cancer.gov, cdc, webmd, medline, ect. Information obtained from The Oral Cancer Foundation allowed a partnership to develop with our treating physcians. Mutual trust developed when the physicians acknowledged and respected our information sources. We were allowed to be part of the decision making process. Knowing the pros and cons of each step and direction of possible treatment is ultimately the responsibility of the patient. We experienced a positive outcome and cancer free now for 4 years.

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

the continued research of why oral cancer is increasing in numbers while smoking is decreasing.

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

be very proud.

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

my husband survived and has flourished after being treated for oral cancer.

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

Professional, informative, nonjudgmental, factual, supportive.

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

cut oral cancer deaths by an astounding amount.

Ways to make it better...

I found the Oral Cancer Foundation site on day one of diagnosis and not a second later.

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

Getting additional PR exposure.

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

The Oral Cancer Foundation is invaluable.

When was your last experience with this nonprofit?

2009-1-01

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

I found this web site after my 34 y.o. husband was diagnosed with Stage 4 oral cancer. Thank God, he survived. The web site provided me with a trustworthy resource for accurate, helpful information. Even more importantly, they provided me with an opportunity to reach out to spouses, patients and survivors with my questions and my fears. Oral cancer has many cancer-specific problems and questions that general cancer websites could not address. I am incredibly grateful they were there when I needed them.

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

my interaction with other website visitors and forum members

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

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

They helped me to have the strength I needed to help my husband recover. I also make sure my Amazon purchases are linked back to their website.

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

Make the unknown risk factors more publicized. Oral cancer is one of the few cancers growing in numbers but without significant advances in treatment. The outcome, even if the patient survives, can severely affect quality of life.

Ways to make it better...

Long time forum members had not been critical of some comments that were made by visitors.

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

Mostly, public awareness. People who are young and never smoked or chewed tobacco can still be victims of this potentially disfiguring and life-changing disease

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

When was your last experience with this nonprofit?

2009-3-01

 
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