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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 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

373 Stories from Volunteers, Donors & Supporters

1 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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1 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!

1

Client Served

Rating: 5

Never would I thought my husband would face cancer at the age of 57. What a shock to have oral cancer since he never smoked or drank and it was non HPV. Through this site I have found the information and support that helped me as a caregiver go through this journey of treatment. Often issues would arise from radiation and treatment and I was able to relax and say that is normal from what others had shared of their experiences. There are many knowledgeable people who continue to offer their advice and opinions and share their personal experience. The forum is a place to come to when support is needed from those who have been down the same road because often friends and relatives just don't relate to what we are going through.

1

Client Served

Rating: 5

In the past month I've been diagnosed with an oral cancer. I began to search for information (in addition to what was provided by my consulting oncologists) and was greatly relieved to find such a great resource as this and so specific to my ordeal. Not merely informational but supportive and caring.

1

Board Member

Rating: 5

I was diagnosed with oral cancer back in April of 2014. With very little information on my condition I did a quick online search to try to learn more and luckily stumbled upon the Oral Cancer Foundation. The boards and forums were filled with information and other people in similar situations. When you face something like this it is truly a blessing to be able to get information and talk to other survivors or caregivers and to feel supported from people who fully understand what you are going through. This site provides a wealth of knowledge and hope for people who are diagnosed. I am so glad that I found it as I am sure it would have been much harder had I not been able to get advise and support from those who have traveled a similar path.

Client Served

Rating: 5

I wish I had found the Oral Cancer Foundation before I did, it would have alleviated my suffering greatly.

The amount of "been there, done that" type of information available and freely given by those who have been through this ordeal is both amazing and incredibly useful.

I continue to suffer from recurrences of the cancer (I'm in my 6th at present) and this organization continues to provide comfort and support from the members to the members, God Bless the OCF and its members!

The Oran Cancer Foundation is an organization that deserves support at all levels!

1

Client Served

Rating: 5

As the caregiver to my husband, diagnosed 6 years ago with stage 4 base of tongue cancer, the Oral Cancer Foundation was my most important resource for information and support, outside of his physicians. I could even make the case that medical information, without support from the OCF, would not have been as successful.

It is almost impossible to explain how grueling the treatment for oral cancer was to complete. Once completed, we still needed help with numerous difficult side effects of the treatment. Six years post-treatment, I still rely on the information and member forum section of the OCF.

2

Client Served

Rating: 5

The Oral Cancer Foundation (OCF) is the very best small nonprofit! They help thousands of oral cancer patients and caregivers with their online forum. The OCF helps educate the public with awareness walks and oral cancer screenings. If all that isnt enough, they fund research projects to help make oral cancer discovered earlier and easier treatments for patients. The Oral Cancer Foundation is a wonderful organization that makes the most out of every cent. They could give other groups a real education on what a nonprofit is supposed to represent.

1

Client Served

Rating: 5

The Oral Cancer Foundation was vital to my recovery from head and neck cancer. The level of concern and caring from Foundation members and all those who contribute to its forums is simply amazing. I'm proud to be a member of the OCF family.

3

Client Served

Rating: 5

With my husband's diagnosis of throat cancer, my world spun wildly. We made it through the initial treatment. When we learned that the cancer had spread and wasn't as neatly contained as we'd been led to think it would be....my world crashed. It was then that I realized I needed not just the informational help, but also the emotional help, that was offered on OCF. I have made some new kind of friends, and I can't begin to elucidate all that the site has done for me--and by extension, for my family.

3

General Member of the Public

Rating: 5

The most amazing forum with very knowledgeable and supportive people. I wish I had found it earlier...

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.

2

General Member of the Public

Rating: 5

This site was such a blessing after my treatments for stage 4 head and neck cancer, and continues to be a part of my life as a place to go to give and receive moral support, Love everyone on the forum and Brian Hill does a great job keeping us all up to date on developments in research and developments.

Previous Stories
1

Client Served

Rating: 5

My only regret is that I did not find the OCF website until several months after my treatments ended. The forum has been incredible for me, putting me in touch with many others who have gone through the same experiences and are dealing with the same after affects of treatment. The information available on the site and especially the forum helped me get through the toughest time of my life. I will always be grateful for this wonderful foundation.

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.

General Member of the Public

Rating: 5

I found this site after my boyfriend was diagnosed with cancer. The site and the members have been extremely helpful over the past 3 months, both in the emotional support and the information about treatments. This is an awesome organization, and I feel so blessed that they are available for all of us struggling as patients, and caregivers!!

1 Barry C.

General Member of the Public

Rating: 5

I learned about this site from a web search 7years ago when I was first told about my oral cancer. For me it has been very helpful from there forum pages. If you have a question or a concern just type up your note and you will get replies back to help. It great to have a strong support system like this out there.

1

General Member of the Public

Rating: 5

Going through oral cancer a few years ago, I learned about OCF from my oncologist. Since then I've been a frequent visitor to the forums, read nearly all the educational material and become a regular donor. I can't say enough about the amazing support and expertise offered by both the Foundation itself and the wonderful people who comprise its members, volunteers and just plain Joe and Jane Public Citizens. I've been to many similar sites dealing with other personal medical issues. The Oral Cancer Foundation is the gold standard.

2 Ken_29

General Member of the Public

Rating: 5

I found the ocf site soon after I was diagnosed I learned more in the next couple days than my doctors told me over the following weeks I had answers to my own questions and doctors agreed when asked remarkable site with incredible angels waiting to help you with your struggles even when they are going through there own, I still visit ( lurk) to learn new treatments and keep informed thank you ocf

General Member of the Public

Rating: 5

When my mom was diagnosed this site really helped me too become a patient advocate. Members here encouraged me to push for further treatment options for my mom. I am thankful for this wonderful group!!

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.

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.

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

General Member of the Public

Rating: 5

When I was diagnosed with oral cancer in February 2013 this site provided valuable support and advice. It is a place you can turn to with any question knowing that you will not be judged or your fears belittled. People are friendly and kind and will do there utmost to help and encourage you. Although the site is based in the USA people from all over the world can access the resources and help provided by the site.

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)


2 Dave52

General Member of the Public

Rating: 5

This forum is packed with an amazing amount of information and most importantly an incredible group of support members, who have all lived through it or been a caregiver. I found it at a very scary time, and it helped me get through it.

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....

4 Norma J.

General Member of the Public

Rating: 5

When my sister was diagnosed with oral cancer she found it very difficult to share her problems and concerns with her family or friends as she felt they did not understand what she was truly going thru. She turned to the oral cancer foundation for understanding and support. She was able to share her fears, learn how to manage her treatment, and speak honestly and openly with what went from complete strangers to true friends. No other organization gave her the sense of self that this organization did. No one else shared their personal history like the members of this organization did. She was never alone as long as she had access to her computer. I could never thank this organization enough for what they gave her.

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

General Member of the Public

Rating: 5

Oral cancer brings with it a host of problems, such as swallowing difficulties, learning to use stomach pegs for the first time, losing one's sense of taste - not to mention the side-effects of either chemo or radiation.
The Oral Cancer team were there for me throughout the journey. Having access to expert opinion and to others who had travelled down the same road made all the difference.

Previous Stories
1

General Member of the Public

Rating: 5

Facing the possibility of having my bottom teeth removed following cancer of the tongue, I decided to try and find information about whether or not this was a good idea on the web. This is when I discovered The Oral Cancer Foundation. After posting the enquiry, I soon heard from Brian Hill (the founder) and Gary Allsebrook (a long standing member). They both offered excellent information, for which I am extremely grateful. Had I simply gone ahead without their advice, I could have ultimately lost my jaw bone. I cannot thank them enough for their comments. The Oral Cancer Foundation also provides an invaluable forum for people all over the world to be able to communicate with and learn from others who are undergoing similar experiences, or who have walked the same road. My only regret is that I did not find them earlier, as in so doing avoided what was a very lonely road.

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

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 Emily61

Board Member

Rating: 5

I found OCF when my mother was diagnosed with oral cancer some years ago. The support and information I received from the members was phenomenal. They truly cared about what we were going through. I found myself on the board daily updating my new friends, encouraging others and scouring the website for vital information, which was easily accessible and extremely informative. Had it not of been for OCF, I'm not sure how I would have made it through our journey all alone!

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 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

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 Pam_40

General Member of the Public

Rating: 5

My son was diagnosed with oral cancer at the age of 27. We were devistated and knew nothing about the disease. He searched and found The Oral Cancer Foundation. All the volunteers and survivors and care givers helped my son as he went thru this horrible time. They helped him cope and told him what to expect and what questions he needed to ask his providers. They literally became his family. He passed away last July but he was trying to raise awareness and told everyone he could about the OCF. He wanted to help others as the people involved with OCF helped him. He was a amazing man and would have helped others if he had survived. We will always be grateful to this group of people that give so much to others dealing with this disease.

2

General Member of the Public

Rating: 5

When my partner was fighting oral cancer, the support and advice I got was incredible. I had friends to turn to for advice, ideas, and somewhere where as a caregiver I could have a rant and not be judged. Thanks for your support and the tireless work you all do to bring oral cancer to the forefront. From accross the pond I support all you do.

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 !!!

3 Rachel81

General Member of the Public

Rating: 5

The Oral Cancer Foundation provided comfort, support and hope to my mom as she battled a nine year fight against oral cancer. The friends my mom made through the Oral Cancer Foundation have continued to be a support to me after my mom passed away. I will support the Oral Cancer Foundation and their efforts for the rest of my life and I will always be grateful for this wonderful organization for all that they do.

3 Suess57

Client Served

Rating: 5

I've never seen a charity do more with less. The minimal staff and passionate volunteers made a personal difference with me when I was struggling with the diagnosis. So little information was out there about a relatively unknown disease and this website was flush with information for both patients and caregivers. Their support board is unparalleled with questions answered 24/7. Their efforts in the area of awareness and outreach are outstanding. I don't know where I would have turned without them.


Previous Stories
46

Client Served

Rating: 5

I was diagnosed with oral cancer in March 2007. Prior to my diagnosis, I had heard nothing about oral cancer and didn't know it existed. With critical decisions to make, I trolled the web looking for reliable information and finally came across this site and it's marvelous boards post surgery. What a wealth of information I found while lurking and reading the boards. I was impressed with the knowledge of the survivors who were quick to share experiences with treatment, decision making and daily challenges. I was impressed with the caregivers who came to share ideas and support. I was impressed by the dentists and other medical personnel who explained, translated and helped patients wind through treatment. No question was too small, no poster belittled. It was and continues to be today the greatest source of information and support for oral cancer survivors, patients and those awaiting diagnosis. For a relatively rare cancer on the rise, this site is essential tool and resource for us all that provides the best support with the smallest of financial expenditures. Beyond what it does for current patients, the oral cancer foundation does much to promote prevention and early detection. You can't get more bang for your charity buck anywhere else.

2 Robert83

Client Served

Rating: 5

OralCancer.org, and the dedicated members that are so active on it, were my lifeline while I was being treated for my stage4 cancer for the tonsils. You reached out to me when I most needed you (at 2am) and I will be here for those that come after me. Thank you for your passion to help.

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

Client Served

Rating: 5

I was diagnosed with tongue cancer at the age of 24. After losing over half of my tongue, the OCF was one of the only places I could go to find empathy, answers, and support from others who knew what I was going through. I have now been cancer free for over a year, and the OCF continues to provide support and comfort to me. I am very glad I found this foundation!

2

General Member of the Public

Rating: 5

I am young, and found out on my 30th birthday that I had been diagnosed with oral cancer. I have never smoked, chewed, had a cavity, or excessively drank in my life, yet this terrible disease has chosen me. I can say that the people at The Oral Cancer Foundation have helped make this trying and challenging time more bearable. I am extremely grateful for their guidance, help, and counsel. This organization is a great not-for-profit that raises awareness about a terrible cancer that does not get much recognition. I thank God everyday for such a wonderful group of people.

4 Cindy79

General Member of the Public

Rating: 5

I think I speak for many people when I say that without OCF and the hard work of Brian Hill, Christine Brader, and Eric Statler there are a lot of us who wouldn't even be here, myself one of them.
This site is an invaluable educational and supportive tool for those newly diagnosed, treating and surviving all types and stages of Oral Cancer. This site not only provides information, it helps spread awareness and brings to the public just what a disfiguring and life altering cancer this is.
It also helps with those in a supportive role caring for victims of this cruel disease.

2

Client Served

Rating: 5

My husband this time last year was found to have stage four BOT oral cancer my life went into a spin .Thank God I found this site I got so much advice which helped us know what questions to ask the doctors ,test to be taked befor he started treatment (i.e Hearing tests,thiriod gland etc) what to expect and how to prepare for what was to come.every question is answered and someone there has gone through what you are in the process of going through .I really needed someone to talk to and I was only the carier and they could not have been kinder trying to help me ,they spent time replying to my quiries , concerns and frigal emotional state with unbelivable kindness and with well thought out advice. I will be forever greatfull to those who work with the OCF ,They have a vocation they give freely of the time and experence and they show love and compassion and want the best for all who contact them.
Thank you for being one of my life lines,somewhere to go to in the dark of night when I most needed to quell my fears.

Seana

Ps.The question "How do you feel you were treated by the organization? answer "they could not have done more for me" so QUITE Well" whice is your only option is to lame !

2 Teresa20

Client Served

Rating: 5

The work that the OCF does is so important. Oral cancer is typically diagnosed in it's later stages, when it is more difficult to treat. My cancer was allowed to progress for three years before diagnosis, even though I was under an Ear Nose and Throat doctor's care for the painless swelling in my throat. I did not fit the stereotype of the 'typical' oral cancer patient. And thus, my doctor didn't even consider cancer as a possibility until my tonsils were removed and discovered to be cancerous.
I required the typically aggressive treatment that a later stage oral cancer patient receives. having to go through that treatment could been avoided if my doctor had realized that oral cancer is affecting more and more younger people, and is not just a disease of smokers and heavy drinkers.
The OCF has made great strides in breaking down the stereotype of the typical oral cancer patient; and by bringing about more awareness for the disease, which should lead to earlier detection of oral cancers.
Treatment for oral cancer is among the most damaging of cancer treatments. Even if your cancer is cured, you will have lifelong side effects because of the damage. The OCF is a great resource for long term survivors of the disease who, due to the nature of the damage inflicted, will require lifelong support.

I am a six year survivor of the disease and it's treatment, but not a day goes by that I am not reminded of it.

Teresa

2 Gabriele R.

Client Served

Rating: 5

Congratulations to the Oral Cancer Foundation and Brian Hill for providing accurate information to oral cancer patients and their caregivers. Also to the administrators who show immense compassion and dedication to the forum and the giving of their time voluntarily. The news area is always at the forefront of providing the latest up to date articles and information.
As a 6 year plus survivor I still come here to offer help where I can. I am still being monitored for pre-cancerous issues that show up in yearly biopsies so will also keep coming back with any questions and support that I may need.
The range of information and support from members is extraordinary.
Gabe

3 2010bumpintheroad

Client Served

Rating: 5

This forum saved my partners life and my sanity. The posts are made by the patients going through treatment, the survivors of treatment and the caregivers facing issues of their own. The forum is moderated, so the information is factual (as far as non medics can make it), honest and supportive. Three years on, I still visit the site to share our experience with newly diagnosed people to payback the extraordinary support and information I received when A and I were going through it. Every head and neck cancer unit should have this forum on their list of resources.

Previous Stories

Client Served

Rating: 4

As a carer for my partner afflicted with oropharyngeal cancer, this site became my lifeline. The information provided is 1st class, the support from other survivors and carers who "get it " is invaluable, and the opportunity to explore options and present them to our healthcare providers saved my partner's life.

1 Georgiana H.

General Member of the Public

Rating: 5

I cannot say enough about the Oral Cancer Foundation and what it has meant to me as a survivor. I check into the survivor/patient forum every day. The medical information is easy to understand and the people who participate are some of the most amazing people I have ever met. It has helped me to realize that I am not alone. There are no support groups for oral cancer in my area, and this is one way for me to share my feelings and find out that others are going through the same thing. My only regret is that I did not discover this site until after I had completed my treatments.

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 ames237

Client Served

Rating: 5

The survivor/ patient forum is amazing. The mentorship and advocacy is unparalleled.

2 walknlite

Client Served

Rating: 5

As a survivor, the Oral Cancer Foundation, was there for me to help navigate the whirl wind of appointments. I recommend OCF to many others who I meet who are dealing with oral cancer.

Previous Stories
29

Client Served

Rating: 5

I found the Oral Cancer Foundation after I was diagnosed the Squamous Cell Carcinoma of the tongue. I was very depressed and discouraged about the diagnosis. The members of this site and forum were very encouraging and helpful to guide me direct me to where I needed to go. If I had not found this site I am not sure how i would be feeling today. The main part of the site is full of information about head and neck cancers. I will often go back to the main site and reread articles I have read to make sure I did not forget something. I will be forever grateful to OCF.