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2019 Top-Rated Nonprofit

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 53,000 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 our 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

371 Stories from Volunteers, Donors & Supporters

1

Client Served

Rating: 5

I recently found the oralcancerfoundation web sight and only wish I had found it a year ago when I was struggling with my 55 year old husband's diagnosis of base of tongue cancer. I did not know of anyone with this type of cancer and have struggled over the past 10 months trying to educate myself about this disease and treatment modalities and the future. It is a very lonely cancer to have. Since finding this patient forum, I feel I finally have a place to go where there are others struggling with this type of cancer and it's devastating impact on quality of life. My questions can be answered by others who have been there. It has been a wonderful resource for followup questions and concerns This is a great organization but it has a huge task ahead of it: to educate the public and health care professionals about the increase in oral cancer, especially in those individuals who do not smoke or drink and whose cancer is probably related to HPV. Thank you, Nancy Mazzapica

33

General Member of the Public

Rating: 5

This helped my friend a great deal. Her husband was greatly helped by this organization. I highly recommend it to anybody.

1

Client Served

Rating: 5

Four years ago I started a journey which I never would have believed "Could happen to me". It was frightening, painful, debilitating, and financially stressful. As I went through treatment (2 different bouts) and came through the other side of treatment I was assisted by others on the Oral Cancer Foundation website who had "Been there, done that" and could not only help but truly understand. The resources are great and the caregivers on the site also assisted my family members along the way with what to expect. I now try to give back by helping others through their treatment and battle with this horrible disease. THANK YOU OCF!

1

Client Served

Rating: 5

I could not have made it through my treatment for oral cancer, or the recovery afterwards, without the information I gained from the OCF website, both the research articles they have there and the knowledgable people on the patient/survivor board where anyone strugling with this disease can get GOOD advice (misinformation and bad advice is quickly caught and erased--another plus for them). Through OCF and the pother survivors who post on the board, I found doctotrs for a second opinion as well as an expert that could help me with swallowing problems I had after treatment. The people there that had already been through what I went through are the ones that kept me going.

28

General Member of the Public

Rating: 5

My brother-in-law and a great-niece both had cancer in thier mouths. They have both passed away, but while they were alive, the OCF helped, and has been a great comfort to my niece.

1

General Member of the Public

Rating: 5

I work in biological research and have always viewed cancer or any other disease a problem to be solved objectively. Frankly, for that very reason I have never really cared for the toll it takes on people affected or their friends and families. I believed that there was not much I could contribute unless I was part of the solution. Until of course one of your own falls prey. My friend had oral cancer 2 years ago. He has done well since then. But I was privy to empathy that I wasn't sure I had before. The OCF was a huge factor in his successful fight. I am grateful and would like to contribute in other ways than I previously thought possible. Thank you.

1

Client Served

Rating: 5

The member forum for the Oral Cancer Foundation is the most positive place on the internet. The incredible knowlege base of the members provides caregivers and patients with both spiritual strength and medical knowledge to fight the good fight against all forms of oral cancer. My husband had to undergo both chemotherapy and radiotherapy for laryngeal cancer. The info provided in the member forums helped us make it through to the other side.

1

Client Served

Rating: 5

I am a caregiver to my husband who is suffering from Stage IV Cancer at the base of his tongue. This cancer is particularly deadly especially if the tumors do not test positive for HPV. Already he has had a recurrence and a third time would be "catastrophic" as one doctor warns us. OCF is the full service stop on the internet: news, research, facts. advocacy and a virtual support group. It has meant a lot to me and even more to my husband.

1

General Member of the Public

Rating: 5

This is a great website that has helped many people spread the word about oral cancer, its causes and treatment. My friend has oral cancer and this disease has irrevocably changed her life. Her doctor told her it used to be known as the "alcoholics cancer" seeing as big risk factors include smoking and drinking, but she tell me that there are so many young, non smokers posting on the forum that it gets very difficult to watch. The well established connection of this cancer to a certain strain of HPV is finally getting known in the health care community.

1

Donor

Rating: 5

I contribute to the organization due to the tremendous potential they have to save lives. Seeing how they have grown and helped so many people is very satisfying. The Oral Cancer Foundation has been instumental in educating as many phycicians and the public as they can. Remarkably, they do this on a shoe string or less budget. It would be very gratifying to see what they could accomplish with some respectable funding.

1

General Member of the Public

Rating: 5

My friend Donna from Canada had tongue cancer. She looks good today but she has been through hell and back. Sometimes she gets very close to the people she meets there and then it is very hard for her when their cancer comes back. I help her through those times. We have been good friends for years. Although we are separated by miles we are together in friendship.

1

Client Served

Rating: 5

I'm 32 years old and have oral cancer. It started 3 years ago with a sore thoat. I have a husband and 2 little boys, that don't understand Why mommy is sick all the time. OCF has experience personal that answer my questions and give me support. There is some question they can't answer on line, so they refer you back to your doctor. I have lost about half of my tongue and my teeth,and I have a feeding tube and can not chew, swallow or talk. I've had 4 surgery and the OCF organization has been there for me, be it to rant or to know, what I can put down the feeding tube. or to just cry. They have given me new hope. They have good resources and easy to find answers.

21

Client Served

Rating: 5

The Oral Cancer was a great resource for my husband when he was battling tongue cancer. Prior to his tongue cancer, we had no awareness that oral cancer existed and that a simple screening should be done by dental professionals at every visit.

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

General Member of the Public

Rating: 5

I am in the medical field, and I have professionally, and personally dealt with this cancer. I lost a friend Minnie Ashworth leaving behind children, and grandchildren who loved who deeply, and dearly!!!! She fought a courageous fight, but lost her battle. But with this foundation, I believe that she had a great chance with their help, and support. I also had a patient with tongue cancer that is alive, and well. So this Foundation is not in vain!!!!

16

General Member of the Public

Rating: 5

my mom had oral cancer and i know that her being able to talk to some of the people on here helped her get through a lot of it .

1

General Member of the Public

Rating: 5

I am a caregiver. My wife Donna is a two time oral cancer survivor. She first had cancer in 2004 and then again in 2007. This has been a very rough time for us, but I know she spends alot of time on the Oral Cancer board and I know there are times when she has been helped alot by other people who have the same disease. So far I have not needed to go there to find out what other helpers are doing because our medical system provides alot of support.

13

General Member of the Public

Rating: 5

This organization really helped out my friends in their time of need and I am thankful for that. They are also very thankful and have only good things to say about it.

1

Client Served

Rating: 5

I was diagnosed with base of tongue cancer a few years ago. Initially, my ENT talked of cutting out my tongue, then radiation and chemo, followed by slicing or disecting my neck near the jugular vein. Quite frankly I contemplated suicide. I will be forever be grateful to the Oral Cancer Foundation. We learned how to talk to the ENT by learning a so much from this site. The ENT saved my tongue, didn't slice up my neck, but I did go through some of the roughest chemo and radiation treatments according to him. I made it, and have been cancer free for 4 years.

1

General Member of the Public

Rating: 5

My niece, a non-smoker, developed oral cancer in 2005. No one in our family ever had this disease so we could not offer her much advice or guidance. Fortunately she found the OCF website and forum to help her get outstanding advice and guidance. This really helped her deal with her disease and ask informed questions of her doctors.

1

General Member of the Public

Rating: 5

OCF was such a great help to my daughter. She would set for hours talking to friends she had made thru this org. I know that this was a great help to her

1

Client Served

Rating: 5

Having cancer is taints you forever. Even if you are lucky enough to survive you are damaged. Your physicians are pretty much useless at that point. What is helpful is a community of cancer patients. This keeps you grounded and humble, the fact that I can write this makes me one of the lucky fews! As bad as it is it can change you for the better!

12

Client Served

Rating: 5

this organization helped my aunt and her family soo very much we thank you all soo much for all you do for familes that are dealing with oral cancer

1

Client Served

Rating: 5

I have oral cancer. This is a frightening experience, it is central. you do not get to just cut a little piece of tissue off... it affects speech, swallowing, taste etc.

11

General Member of the Public

Rating: 5

My co-worker's brother died of oral cancer. When my son-in-law was diagnosed with base of tongue cancer, my daughter was a wreck. I wanted to shield her from the gruesome details my co-worker went through. My daughter then found OCF and learned a great deal. She was still on edge but became stronger as she learned more and more. My son-in-law did well and is cancer free now.

1

General Member of the Public

Rating: 5

A very dear friend of mine and her family received support and help through friendships and advocay and information from the OCF. As an OC victem, the foundation was very helpful to her and her children. i suppor this foundation 100%

1

General Member of the Public

Rating: 5

my friend's mom had oral cancer and the ocf was very helpful not only to her but to her entire family as they were dealing with the most difficult time in their lives

1

Client Served

Rating: 5

I have oral cancer, It has been very hard living alone and going thou this battle, I have rely on the good people at OCF. They have given me the will to live and not to give up. Only 2 more weeks of treatments, I can do this. I have a long road of recovery ahead and I know OCF members will be here to help me get thou it.

1

Client Served

Rating: 5

The oral cancer foundation provides much needed professional advice about many facets of oral cancer. This encompassed background info as well as much needed practical advice.

1

General Member of the Public

Rating: 5

My daughter was diagnosed with oral cancer a few years ago. The help and support of the other survivors and caregivers she meet on the OCF forum helped her get through the treatment. The information on the website on oral cancer is the most comprehensive around. The Oral Cancer Foundation is a wonderful organization.

1

Client Served

Rating: 5

My mother passed away from oral cancer and it was the OCF that got her through 5 very trying years. The community that has been created through their very well maintained forums offers patients and care givers a place to share theirs and learn from others experiences. OCF should win this award because it is working very hard to spread awareness about a disease that is virtually unheard of to thise not effected by it. If my mother had not found the website, I hoonestly do not think she would have survived 5 years.

1

General Member of the Public

Rating: 4

The OCF was very helpful when my cousin's daughter was diagnosed with oral cancer. Finding support and assistance at a difficult time can make the all the difference for the family and patient.

1

General Member of the Public

Rating: 5

My mother was diagnosed with tongue cancer 4 years ago. She was a non-smoker and otherwise very healthy. It was a shock to hear that she had cancer. The treatment was difficult, but fortunately she found the Oral Cancer Foundation website to help her through it. The information on the website is the best around, and the support she received from the forum was outstanding.

1

Client Served

Rating: 5

I really appreciate all the information found on OCF. I refer to it all the time with my doctors and dentists. I am glad they teach so many professionals about oral cancer to better help us as patients. I found the forum during my treatment for tonsil cancer, and the kind and caring people helped me through my journey so far.

1

Professional with expertise in this field

Rating: 5

I am a Oral Hygenist. One of my patients referred me to The Oral Cancer Foundation site to learn more about the increasing occurance of oral cancer especially in younger people. This site was extemely informative. I have had many discussions with the Dentist I work for since then. Early detection is critical.