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The Oral Cancer Foundation

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Nonprofit Overview

Causes: Cancer, Health

Mission: The Oral Cancer Foundation is a non-profit 501c3 charity that works to provide information about this disease to the public and to medical and dental professionals, advocate for patients, and provide support services to them. OCF operates the world's largest real time, patient-to-survivor interactive support service via the web, and the foundation's main information web site, which contains thousands of pages of information, receives over 24 million hits per month. We are also sponsors of research, primarily in the area of detection mechanisms that facilitate the discovery of the disease at early stages when survival rates are the highest, the relationship of the HPV virus to oropharyngeal cancers, and immunotherapy treatments for oral and oropharyngeal cancers.

Results: *WINNER OF THE CANCER FIGHTERS AWARD from GNP as the BEST SMALL CANCER NON-PROFIT in AMERICA* Oral Cancer Awareness Month – April Oral Cancer awareness in the American public is low. Approximately 49,750 people in the U.S. will be newly diagnosed with oral or oropharyngeal cancer this year. Dental professionals are often the first line of defense against oral cancer, through the process of early discovery. While smoking and tobacco use are still major risk factors, the fastest growing segment of oral cancer patients are young, healthy, nonsmoking individuals due to the connection to the HPV virus. We cannot stop this very common virus from spreading; our only hope to save lives is with professional involvement and public awareness of the benefits of a preventative vaccine. This is your opportunity to get involved and give back to your community in hopes to raise oral cancer awareness and the need for early detection in order to save lives. Together, we have the opportunity to make a difference in the world of oral cancers. Please join us. Rodeo - Tobacco Outreach - "Be Smart. Don't Start.” Rodeo cowboy, Cody Kiser, and cowgirl, Carly Twisselman, have partnered with OCF to spread a simple message to the youth at rodeo competitions, “Be Smart. Don’t Start.” The foundation is a big believer that in order to solve problems, you have to become engaged where the problem lives. Kids look up to athletes, not just in rodeo, but major league baseball and elsewhere as “heroes” that they would aspire to be like. Unfortunately, no hero is ever perfect. OCF has begun to program to put alternative role models out in the world of rodeo cowboys athletes, with the intention of reaching young people before they make addictive choices that will harm them later in life. With Cody and Carly’s support, we expect to have a larger presence in the rodeo world and reach many more young people with our anti-tobacco message. Be Part of the Change: The RDH community is uniting to be part of the much needed change in reducing the historically late discovery of oral cancers. With their commitment to performing oral cancer screenings and being the first line of defense, they have the opportunity to find cancer in its early stages. Early discovery and diagnosis, yields better long-term outcomes, and lower morbidity to those who undergo treatments. In addition to screening patients they see in their daily practice, we have partnered with hygienists across the county to build screening teams to perform free oral cancer screenings in their community. A combined effort between professional engagement and public awareness is essential in order to raise awareness of this silent killer and educate the public about the importance of an annual oral cancer screening. The foundation Screens tens of thousands of individuals each April, oral cancer awareness month through are partners in the medical and dental community

Target demographics: While historically the majority of people are over the age of 40 at the time of discovery, oral cancer does occur in those under this age. It is also now confirmed that in a younger age group, including those who have never used tobacco products, have a cause which is HPV viral based. The human papilloma virus, particularly version 16, has now been shown to be sexually transmitted between partners, and is conclusively implicated in the increasing incidence of young non-smoking oral cancer patients.

Geographic areas served: USA

Programs: Research - Understanding the Implications of Human Papilloma Virus Infection - particularly HPV 16, which is now responsible for the fastest growing segment of the oral cancer population. For over a decade OCF has funded core science which has helped us understand this new etiology. Work that has elucidated demographics, transfer mechanisms, future trends of the infection, treatment response, adn more have been produced by our decade long collaboration with Dr. Maura Gillison and her team. Advocacy - OCF was a leader in the effort to expand the use of the HPV vaccine for cervical cancer to young boys, testifying at the CDC vaccine boards over three years. With strategic partnerships formed with other organizations such as the American Academy of Pediatrics, the foundation finally achieved this goal. At the NIH, we have advocated for clinical trials in the area of head and neck cancers that our science board deemed urgent. These have included research to determine if the HPV protective cervical cancer vaccines would work as well in other HPV cancers such as HPV16+ oropharyngeal cancer, which is the fastest growing segment of the oral cancer population. OCF's founder Brian Hill sits on two NIH oversite committees, one on Immunotherapy in head and neck cancer at the NCI, the other on Long-term outcomes or oral cancer treatment and the NIDCR. Through these positions, we not only stay abreast of the current thinking in treatments and are able to disseminate that to our followers and the public, but we are able to influence research directions as well.

Community Stories

185 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

The best site to go for information and support if you are an oral cancer patient, caregiver, family member or friend of someone going through this disease. I did go through it and found the information and support invaluable.

2

Client Served

Rating: 5

They have a very informative website where you can get educated on the disease, and their forum is a wonderful place to be part of a community of people going through the same thing...it's incredibly comforting to reach others stories, ask questions, read about others' situations etc. and their forum leaders are always available and quick to offer answers and advice. I've met the most wonderful people through this site.

2

Client Served

Rating: 5

There will never be enough words to express my gratitude for the Oral Cancer Foundation website and the people on it. This is my second go around with oral cancer and I'm currently in treatment. I could not have made it emotionally this far without the OCF family. So many people on the site go about and beyond the call of duty to answer questions, encourage and impart invaluable information. Another aspect that I really appreciate about the website is that it's more than just a forum. It also has all the latest information on everything from research, clinical trials, news articles, and rehabilitation, just to name a few. Thank you OCF! - ngk

2 Shawn U.

Client Served

Rating: 5

Hello my name is Shawn, When I found out that I had squamous cell carcinoma the first thing I did after telling my family was to find out as much as I could about my particular cancer. I wanted to be informed so that I could better make choices when it came to what treatments would suit me best in the road ahead of me. I believe when I found The Oral Cancer Foundation Was a pivotal point in my journey.
Not only did I find answers to my many questions and concerns, and I think now more importantly I found friendship and compassion. I had an ally in my battle with oral cancer. And for this I will be eternally thankful.

2

Client Served

Rating: 5

I have had oral cancer twice, without any known cause (no tobacco/drinking or HPV). Unfortunately, I won't be the only one you hear about getting oral cancer in the future. I also know that without the help of The Oral Cancer Foundation, I would have felt completely lost and alone when I was diagnosed. It has been through OCF that I have found great support and friendships that will last a lifetime. Sadly, some of those "lifetimes" have been cut tragically short, in an unfair and brutal manner.

The Oral Cancer Foundation and its community has some of the greatest people that donate their time, love, and compassion for the help of others currently fighting, surviving, or trying to make their way in this world without their loved one. They are the "go to" source for a plethora of accurate, medically-vetted information that will help cancer victims, their friends/families, and caregivers.

Their website helps you to understand the different types of oral/head/neck cancers, treatment protocols, things to expect, tips on dealing with all aspects of the disease, and how to navigate through your life since it has been turned upside down by a diagnosis of oral/oropharyngeal cancer. I would STRONGLY suggest getting on the patient support forums, where you will find old-timers, regulars, and newcomers who are ready and willing to welcome you with open arms. There is no better support forum, in my opinion.

The Oral Cancer Foundation certainly lives up to its mission..."The Oral Cancer Foundation is a national public service, non-profit entity designed to reduce suffering and save lives through prevention, education, research, advocacy, and patient support activities."

Thank you for giving me the opportunity to tell you about OCF!

Sincerely,
Kerri (2 time oral and oropharyngeal cancer survivor, one day at a time)


1

Client Served

Rating: 5

When I was given confirmation that I had HPV+ cancer on my tongue and neck I had no idea of who to turn to for support and information. My medical was top notch and leading research on my cancer. They gave me as much information as possible. I wanted someone who had gone before me to guide me through treatment. I hit this site and was given every item of information I needed from those who went before me and found the encouragement I needed to persevere and come out of my trials. I am 11 weeks post treatment and have a family on this website.

2

Client Served

Rating: 5

The Oral Cancer Foundation has the best up to date educational information. When my husband was diagnosed, it was a relief to find it, so that I could educate myself and be an effective advocate for him.

It's forum site is a life saver for exchanging experiences. It provides a place to give and receive advice and support to patients and caregivers.

2 Ingrid K.

Client Served

Rating: 5

After being misdiagnosed for 6 months, in Dec. 2010 I got the devastating news that I had Stage 3 tongue cancer. I had never known anyone who had this type of cancer, so off to the internet I went. I went ahead and had surgery on 1/3/2011 which got rid of the tumor but left me disfigured and unable to eat or even swallow or speak. It was months later that I finally found OCF. The volunteers and information I found there helped save me. I was at the point where I really was struggling to go on and after reading other survivors' stories, I realized that I had to go on one step at a time and come out the other end of the tunnel...not only for myself but for all of the others who were not going to survive and never had the chance that I had. Thank you OCF..... you people rock !

Previous Stories
1

Client Served

Rating: 5

Thanks to everyone at OCF, especially Brian Hill, Christine and Eric. The info and support provided at this site is far above anything else you may read. They help cancer victims and caregivers who have been dealt the scary diagnosis of oral cancer. They are the best group of human beings who give freely of their time and experience to make the whole treatment regimen a lot easier to bear. I will be forever grateful to them all.

2

Client Served

Rating: 5

Following a tonsillectomy in Nov. 2007, I was diagnosed with squamous-cell cancer which was under my right tonsil and had spread to some nodes on the left side. This was followed by 7 weeks of radiation with 1 day/week chemo ending in Feb. 2008. At that time, I knew absolutely nothing about oral cancer and fortunately, I found the Oral Cancer Foundation site. This was truly a blessing, because as a member, I was able to correspond with others who had experienced things I was experiencing and I could write questions about problems and what I was going through. Other members would join in immediately with their suggestions and like experiences, and offers of help. I learned far more from the Forum members than I ever learned from my doctors. I always got an answer to my questions from two of the members, Christine and Eric, almost immediately. I thank the good Lord for the work, time, and effort Brian Hill exerts for the Forum as OCF Founder and Director. I would give this organization 10 stars if possible.

3

Client Served

Rating: 5

My husband was diagnosed with Tonsil Cancer, Stage III in May of 2013. Thanks to this wonderful group of survivors who supported us through each scary step of his treatment. Although the Oncologists had given us general information and statistics for this type of cancer and it's treatment (radiation/chemo), to receive information from wonderful people who have survived this Cancer made ALL the difference in accepting vs. being proactive in this journey, being hopeful vs hopeless.
Because of suggestions and encouragements from this group (and despite the damage and post-treatment effects of radiation), one month out from treatment, my husband is almost at 100% - working full time, eating and swallowing, traveling, SURFING! We are a grateful family, to have this kind of hand-holding, during an extremely tough time. Aloha....

3

Client Served

Rating: 5

This site, the people that run it and the support it gives OC patients like myself is invaluable! It's hard enough to deal with a cancer diagnosis, treatment and recovery. I can honestly say OCF has made my journey with cancer one that I can now navigate.

2

Client Served

Rating: 5

When I was diagnosed with oral cancer I knew nothing about the disease and how prevalent it was in society, with ocf's help I was able to understand the standard treatment course and prepare myself for the battle that oral cancer is. The members and subscribers were incredibly supportive and informative on all aspects of the cancer journey from diagnoses to being a survivor.....thank you OCF

2

Client Served

Rating: 5

I found OCF after I was diagnosed with oral cancer. OCF as a plethora of good information. Most important the information is not just cut an pasted together but is vetted and researched.... AND updated. The most importantly there is an outstanding forum for patients and support people that addressed issues that arise before, during and after treatment. This provides info and discussion on radiation, surgery and the many aspects of chemo therapy by people who are undergoing this and by cancer survivors. These survivors come from all walks of life and include, dentists, other health care providers etc. Want to know how to deal with a PEG, physically and emotionally, read survivor stories.
The forum is monitored by people with inside knowledge..... oral cancer survivors.

3 ray1971

Client Served

Rating: 5

When I was diagnosed at the age of 36, like so many, I knew nothing of oral cancer. OCF helps many people affected by OC through it's well documented, spot on accurate information as well as its on-line support group that teaches others through first hand knowledge and experiences from great people all around the world. An important factor that cannot be overlooked is everything done by Brian Hill, and all the awesome volunteers that do all the leg work to get the word out for early OC detection! They help lives, they save lives, they make a difference in someone's life every single day, 365 days a year. OCF is an asset and a gift to so many individuals.

Raymond Flaherty, OC survivor

Previous Stories
46

Client Served

Rating: 5

Thankyouthankyouthankyouthankyouthankyou--AND THANK YOU!...The Oral Cancer Foundation and everyone involved from the founder, staff to the people who dedicate their time are some of the most wonderful people in the world. When I was diagnosed I was in shock and I was able to get through this treatment because of my loved ones, God, the doctors and OCF. OCF was able to give me something extra that others could not...An understanding of every little crappy thing that comes along with this dreaded disease...An understanding from those that traveled before me. OCF helped me live and I am grateful from the bottom of my heart. Thank you, Raymond Flaherty

2

Client Served

Rating: 5

I was diagnosed in August 2009. It was a very scary time. I had no idea what to expect or where to turn for first hand information until my sister found OCF. At a time of disbelief and horror, the family that is OCF was there with information, guidance, compassion, understanding and the kind of first-hand knowledge I needed to walk me through the harrowing experience that is oral cancer. To have access to immediate answers and information 24/7 is truly a unique and invaluable resource for patients, caregivers, family and friends alike. I have made lifelong friends among many members of OCF who continue to offer comfort and support in ways that friends and family could never understand. It's a place where bouts of depression are understood, accepted and worked through in a way that only someone with the same experience can relate to.

2

Client Served

Rating: 5

In 2007 my father was diagnosed with oral cancer. He had just turned 75 years old and he and my mother were not very familiar with using the internet, so I set off to find as much information as I could to help them out. Almost instantly I found the Oral Cancer Foundation. Everyone on the forum was so helpful and supportive during our 18 month journey. We knew absolutely nothing about oral cancer and the little bit we had heard from the doctors was very scary.

24 hours a day 7 days a week I was able to connect with survivors and caregivers who would be there to lend a listening ear or give advice on how to deal with the daily struggles of having to adjust to this "new normal". Sometimes I felt like we got more information on how to deal with the daily struggles of eating and other issues that are only specific to oral cancer patients than we did from the doctors that were actually treating my dad.

I highly recommend OCF to anyone who is going through or a caregiver to someone with oral cancer. I cannot imagine what our life would have been like without the help of the caring, compassionate people that I met along our journey. I will be forever grateful for their help.

2 clroser

Client Served

Rating: 5

My husband was diagnosed in Dec 08 and we knew nothing about oral cancer. Thanks to OCF for always being there with answers and news and advice. OCF has been my "go to" spot for over 4 years.

Previous Stories
47

Volunteer

Rating: 5

I found the Oral Cancer Foundation about a week after my husband was diagnosed with oral cancer. Neither of us was familiar with this disease and our treatment center was an hour and a half away from our home. We had lots of questions and the good members of the forum on OCF and the wonderful educational pages made our journey easier. For patients and caregivers, family members and friends, this is a resource that is a must have!

2

Client Served

Rating: 5

In the spring of 2006, my perfect, busy, wonderful, HEALTHY life, came to a crashing, thundering halt. One phone call on May 1st and my life changed forever..."you have cancer"....three simple words.

What followed immediately thereafter was horrific; the screams of denial from my family, my children were teenagers suddenly thrust into a situation that most do not experience until their 50's...the potential loss of a parent. Trying to find information on oral cancer was frustrating...there simply wasn't much available from the Doctors, in the library or on the web...until I found the Oral Cancer Foundation.

A few moments there, and I knew, deep down, things would be all right. When you're diagnosed with cancer, your world is suddenly filled with a lot of people; family, friends, friends of friends and family, medical professionals, and then if you're very lucky, you find the support and compassion of people who have been there....like the Oral Cancer Foundation.

These aren't a bunch of "internet experts"...these people are my FAMILY. They had walked the same path, undergone the same horrors that I went through, had the same fears, the same lack of information initially.

I fought the Beast that is oral cancer actively for a year. the following 6 years have been a blessing; seeing my children become adults, marry and have Grandchildren for me to spoil. I have the tools I need to live my life in my "new normal". When there are bumps in the road, I ALWAYS have my family at OCF to turn back to for knowledgeable advice, support and compassion. The people at OCF are different than anyone else in my new, "post cancer" life; my OCF family GET IT. They have walked in my shoes, and they understand that even with the new lease on life given to my by the amazing medical expertise around me, there would be many challenges to face. Without them, many of those challenges would have been insurmountable. With them, I know I can make it through.

Wayne Reimer
Regina, Saskatchewan

2 Wendy A.

Client Served

Rating: 5

My husband has battled with oral cancer and it's after effects for the last 4 years. Without the support and guidance from OCF I don't think we would have coped nearly as well. We are in Australia and have minimal knowledge available here for head and neck cancers. Support is also very minimal. There are organisations that do a wonderful job here but none that focus just on what we were dealing with. It was very comforting to me as his carer, to find OCF and I was welcomed with open arms. Even now 4 years later as we still struggle on and face new challenges, I know everyone is still there for us.

2

Client Served

Rating: 5

The Oral Cancer Foundation saved my life while I was going through 7 weeks of chemo and radiation. I know in my heart of hearts that I never would finished these aweful treatemnts without the love and support I got from both the very active members and the other cancer patients who were at the same stages of treatment as myself. The group helped arm me with the facts about oral cancer and the treatment options. The other patients and I leaned on eachother for support and guidence. They all became like family to me. I really really don't know where I'd be without them. I'm SO glad I found these folks !!!