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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

43 Stories from Volunteers, Donors & Supporters

2

Volunteer

Rating: 5

At the age of 46, I was diagnosed with HPV related oropharyngeal cancer, and I was stage 4. As a Dental Hygiienist, I had the background to be able to research this insidious disease, which helped to abate my fears. The Oral Cancer Foundation proved to be the most credible resource for me, by providing me with the most current studies, and information. I am so grateful for all the funding they are able to contribute to relevant studies, and the raising of awareness. Moving forward, now that I am over 3 years post-treatment, I send many newly diagnosed patients to the OCF website. I am so happy to be an advocate for raising awareness about this epidemic!

Advisor

Rating: 5

The Oral Cancer Foundation is an amazing small nonprofit with a worldwide presence. Helping oral cancer patients and caregivers all over the world with up to date, correct medical info and support on the online patient support forum sets The Oral Cancer Foundation apart from other online support groups. OCF's members truly care about each other and embrace new members immediately as one of their own. Nonprofit organizations cant get better than The Oral Cancer Foundation in all areas of helping others. I would give them a 10 star rating for everything they do to bring awareness of oral cancer, helping the general public with free screenings and funding research.

Previous Stories
3

Advisor

Rating: 5

The Oral Cancer Foundation helps oral cancer patients and caregivers during their darkest days. Invaluable and correct medical info and support is given to those in need. This small nonprofit makes a nationwide presence with campaigns to bring oral cancer screenings and awareness of oral cancer to the general public.

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2 Anne-Marie1234

Volunteer

Rating: 5

I found out about the Oral Cancer Foundation when my son was undergoing Radiation treatment for oral cancer. As I waited for my son to get back from his treatment, a young man sitting nearby came over to me and as he left for his own Radiation treatment, he smiled as he bent over and said to me, "Go to the Oral Cancer Foundation. They can help". I think often of this young man often and bless the day he led me to this wonderful organization. I don't know what we would have done without the kind and compassionate and knowledgeable help we received from everyone at the Oral Cancer Foundation. and all its volunteers throughout my son's treatment and beyond. In those early days of my son's recovery, I was online with the OCF many times throughout the day but no matter the time of day or night, there was always someone to help with never ending compassion and practical suggestions. They helped me over and over to help my son recover and to be strong for him. Day by day, I learned how to care for him and through the experience of others who were a little ahead of where my son was in his treatment, I was encouraged and was helped to learn what to expect at each stage. The research that this organization is part of is beyond amazing in what they have been able to do. I am so very grateful to Brian Hill, the founder for creating this tremendous organization.

Previous Stories
1

Client Served

Rating: 5

My son and I found the Oral Cancer Foundation almost 8 years ago when he was diagnosed with Squamous Cell Cancer. Without this organization I don't know what we would have done. We found all the latest information, plus the support and compassion from members who had direct experience with oral cancer. Over the years I've been amazed how this site continues to keep us informed about all the latest research and information on Oral Cancer as well as the technical improvements to the site which makes it even more perfect than it already was! My son is cancer-free now but does have long term issues as many patients do, so we continue to benefit and learn from all the developments and issues related to the effects of radiation treatment which he received. I am so very grateful to Brian Hill, the founder of OCF and to all the wonderful people who make this the great organization that it is.

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2 Elizabeth225

Volunteer

Rating: 5

I found the Oral Cancer Foundation’s online forum while going through treatment. The wealth of information and support that is provided is priceless. The foundation’s mission is designed to reduce suffering and save lives through prevention, education, research, advocacy, and patient support activities. Coping with oral cancer can be complex. Not only is the patient dealing with a life-threatening disease, but also with changes in physical appearance, speech, the ability to swallow and eat, smell and taste. I firmly believe in spreading awareness and getting screened because getting screened can literally be the difference between life and death. I don't know what I would have done without OCF.

2

Volunteer

Rating: 5

My family is very grateful for the Oral Cancer Foundation's work in supporting patients and their families as they navigate diagnosis, treatment, and survival, and for keeping the public abreast of research and and relevant news. The support forum has been particularly helpful. My mother was diagnosed with advanced squamous cell carcinoma of the tongue, and through OCF, we have been able to research clinical trials, access other resources, and communicate with survivors and caregivers farther along in the process.

2

Volunteer

Rating: 5

My mom became a member of the OCF after her first battle with oral cancer. During my mom's nine year battle the OCF provided support, resources and friends that helped her endure. Unfortunately, my mom lost her battle with oral cancer in 2011. The OCF continues to be an amazing outlet for me to help spread awareness and promote oral cancer screenings. I am so grateful for the OCF and everyone associated with this foundation!

2 Anita11

Client Served

Rating: 5

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.

Previous Stories
2

Volunteer

Rating: 5

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.

davidcpa

Volunteer

Rating: 5

I survived oral cancer and can't thank the OCF enough for all that it has done fopr me over the last 8 years of recovery.

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Volunteer

Rating: 5

I have been coming to this site for over 6 years on a daily basis helping others that have not been where I have. It is truley the BEST oral cancer website IN THE WORLD.

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Uptown

Client Served

Rating: 5

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.

Previous Stories
3

Client Served

Rating: 5

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.

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Theresa41

Volunteer

Rating: 5

I was diagnosed with stage 3 tongue cancer last August. As a 35 year old mother of 3 I was devastated. I of course went on the Internet to learn all I could about oral cancer. I came across this site and immediately felt at home. I was able to get support all during my radiation and chemo treatments. I was also able to relate to others and help with issues as well. I could not have gotten through it without this site!

4

Volunteer

Rating: 5

I found OCF when researching reconstruction of my mandible which had been removed because of cancer. I learned a great deal from the website and received honest and helpful information and support from the forums. I continue to follow the latest news via the RSS feed on my homepage. On the forums I learned much about the importance of having others who understand the impact this form of cancer makes in a person's life. I have had two other forms of cancer and fond this site to be much clearer, better organized, and more reliable on a scientific level than sites devoted to other forms of cancer.

3

Volunteer

Rating: 5

When my husband developed worrisome symptoms three years ago, the OCF provided emotional support for me as a caregiver, and education for both of us moving through diagnosis, work-up for treatments, the treatment itself, recovery and return to a new normal. OCF provides education, emotional support, and a host of practical tips on dealing with this dreadful disease. My husband made it through in good order, and this morning we enjoyed a wonderful walk in the park together. OCF helped get us there.

1 Jo__18

Volunteer

Rating: 5

The BEST by leaps and bounds Oral Cancer Foundation in the world. I found this site 7 years ago during my treatment for Stage IV oral cancer and was helped beyond what any doctor could do and I am still active today helping others going through the same treatment.

3

Volunteer

Rating: 5

Hearing the words "You have cancer" sends you into a downward tailspin. Finding the OCF website and the survivors forum is a lifeline to pull you out of the despair and give you hope to survive treatment. I've had both oral cancer and breast cancer and the treatments are 180 degrees different. It is one long hellish trip. This site not only shows you in pictures what you are up against but gives you thousands of survivors that have made it through and can help you make that journey also. I'm a stage IV tonsil cancer 11 year survivor and this site helped get me here!

2 Janis J.

Volunteer

Rating: 5

I am righting this for my friend Lisa Petersen who was diagnosed with Stage 3 squamous cell carcinoma....cancer of the tongue in 2010. After a very short battle with this disease, she lost her life at 41 years old. Lisa was determined to speak, but cancer silenced her words. Cancer has not silenced her voice..... During her fight, she contacted the Oral Cancer Foundation, and found support with two wonderful women dedicated to this organization, Christine Brader and Susan Lauria. They showed so much support for her while she was ill. Lisa was so full of life even though her body was failing from this disease. If Lisa was alive today......she would be righting this to support the Oral Cancer Foundation. She wanted to do a walk with Chrisine Brader in her future, which never happened. I have become Lisa's Voice to help spread the awareness of this silent deadly disease. Through the help of Christine and Susan I held Lisa's Voice Oral Cancer Awareness event to support the Oral Cancer Foundation. I would give this organization 10 stars!!!! So many hardworking volunteers and the dedication is unbelievable. The dental communities across the US and other countries give the OCF total support. Cancer was not in Lisa's plan for her life, but if she was here today, she would be righting this.

2 KPS5

Client Served

Rating: 5

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!!

Previous Stories
1

Volunteer

Rating: 5

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.

2

Volunteer

Rating: 5

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.

2 Eric28

Volunteer

Rating: 5

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.

1

Volunteer

Rating: 5

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.

1

Volunteer

Rating: 5

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.