After having Oral Cancer Diagnosis and Surgery the past few years have been a struggle receiving proper Nutrition. The Oral
Cancer Foundation is aware that a patient’s Journey doesn’t end overnight. I am forever grateful for the life saving Surgery I received but my Jaw had to be replaced which also meant the loss of my bottom teeth and a portion of my tongue. I happened to see some
Information about a program the foundation has with Vitamix. The Staff was kind and helpful. I just received my Blender and can’t wait to start using it! I am giving this non-profit
rating 5 Stars!!!
This is by far the most attentive and resourceful non-profit organization. No words can express my thanks and gratitude.
Brian is absolutely the gem in this ever increasingly apathetic world. He genuinely cares and makes time to listen to each story in details and offers medically accurate information.
Oral cancer is not a topic most medical media pay attention to on a frequent basis. Brian has created an outlet for oral cancer awareness, treatment and support.
The Oral Cancer Foundation is the very best organization dedicated to helping patients and caregivers thru info and support for their oral cancer. When someone is first diagnosed with oral cancer it can be a lonely and terrifying time! Unfortunately its very common for newly diagnosed patients to know little if anything about oral cancer. The absence of info for one patient 20 some years ago is how OCF was created. Its amazing what Brian Hill along with his wife Ingrid created with a small nonprofit organization that filled the void with page after page of important facts every oral cancer patient should know. The Oral Cancer Foundation has grown significantly since it started, helping thousands of people worldwide each year.
Patients and caregivers who are trying to learn about their illness, the Oral Cancer Foundation has websites that cover anything and everything imaginable relating to oral cancer. The Oral Cancer Foundations online public forum is where patients and caregivers pass along their experiences with each other while supporting those who need a hand. Its one of a kind place that is monitored to ensure only correct medical info is posted without an influence from advertisers. Patients and caregivers quickly bond, many becoming life long friends while learning about oral cancer and things to help get thru the barbaric treatments.
Im a 3 time oral cancer survivor who joined soon after being originally diagnosed in 2007. I cant say enough about all the wonderful things and people that have touched my life and heart with their selflessness, empathy, knowledge and encouragement. I continue to help new forum members who are just starting out and strive to emulate the founders positive example when helping others.
The Oral Cancer Foundation is the most helpful place for patients and caregivers dealing with oral cancer!!! Nothing stops them from always being there to help so many all over the world. Without their support I dont know how I could have gotten thru some of the hardest days of my life. Every medical website should follow OCF's example and help everyone as much as possible.
In March '07 I was diagnosed with Squamous Cell Cancer of the tongue. I was not in any risk factor group and had nowhere to turn for information. My (then) doctor told me NOT to 'go on the Internet'. I did the opposite and found the Oral Cancer Foundation. Thru the steady guidance of OCF during my cancer, treatments, surgeries, and subsequent spread (18 months later) to lymph nodes resulting in more surgery and treatment, I am here and 11 years cancer-free. OCF has been a guiding light spreading awareness and information about a little known deadly cancer. When I was diagnosed the connection to HPV was not known outside of the cancer research world. OCF took the lead in spreading the word about a vaccine that could protect against the agony, disfigurement, and loss of life that can be prevented with early detection. I applaud the OCF for the work it continues as the world slowly recovers from a pandemic which has shifted focus away from cancer. BRAVO OCF!!! ,,, and thank you.
I’ve lost family members to cancer. Recently I lost a close friend to oral cancer. When you even hear the word cancer it’s a frightening thing. At times waves of fear wash over family members along with the people that are in directly battling cancer. Thanks to the OCF we have something else we can count on. OCF offers hope to so many people.
As it has s said in the Shawshank Redemption
Hope is a good thing,
maybe the best of things,
and no good thing ever dies.
I’ve been a dental hygienist for the past 23 years and have a the honor of volunteering for this amazing foundation. It has been extremely helpful not only to me as a dental professional but more importantly to my patients. The OFC has provided much needed support and services for patients in need. They continue to educate, advocate and stress the need for early detection which is key in fighting this disease. The OCF is an extreme asset to the dental professionals and invaluable for patients and their caregivers.
OCF is a phenomenal organization, filled with knowledgable and compassionate people with a shared mission to educate and advocate. I found them when looking for support after my mother died from oral cancer, and was so impressed that I joined as a volunteer to help coordinate the local awareness walks for several years. I will always hold this organization close to my heart, and will continue to direct oral cancer patients and their families to the website for accurate up to date information as well as wrap around support.
This is an organization that has great impact in patients lives. Their patient centric approach engages with individuals right from early discovery of the cancer, through treatment choices, and into survivorship. They are active in every facet of oral cancers from tobacco cessation, to HPV vaccination as preventative measures, to funding new research into earlier detection methods, and clinical trials for improved treatments that are less damaging to patients. They pioneered survivor to patient peer to peer support online two decades ago. I have friends who have been positively impacted by them directly and have seen the quality of the organization through those relationships.
I began working with The Oral Cancer Foundation as an event coordinator for the Boston Walk/Run in 2007. The members of this organization were extremely instrumental in helping the event get off the ground in order to raise awareness and much needed funds for oral cancer research and for OCF's valuable resources. As a dental professional, I have found OCF to be a priceless resource for my patients. Their website has been a useful tool for patients I have referred who are in need of the invaluable information it contains. Not only has it helped my patients understand what they or their loved ones are going through, but it's been a great resource for those in need of additional support through their patient forum. I find OCF to be a tremendous asset to oral cancer patients, their caregivers and dental professionals alike.
The Oral Cancer Foundation truly lives a mission of being a science led organization that looks to change the future in early identification, advocacy, and treatment in this disease process. With this in the forefront, those who organize events are empathetic and energized around educating those around them. Bringing dental hygienists and dentists to their events to perform visual and tactile oral cancer screenings to event participants is what brings life into the work that this critical foundation does. I could not think of a better organization and group of individuals that I have kept in contact now going on 10+ years!
OCF has always been available to answer questions about treatment and complications of treatment for those who have decisions to make or problems to solve. I can call weekends or holidays and have always gotten a prompt call back from a real person. That is uncommon in my experience. This is a nonprofit that really made a difference in my cancer experience
I have been working with the Oral Cancer Foundation since 2018 when I took over as Race Coordinator for the DMV (DC/MD/VA) OCF 5k to raise both awareness and funds for this important cause/organization. Their team was instrumental in helping me stay organized and answering questions regarding logistics, vendors, deadlines and needs to make it as successful as possible. Oral cancer screenings are so important in our dental community (I work for an oral surgery practice) and we always encourage all of our colleagues to perform them on every patient during their semi annual cleanings. It is not uncommon for our practice to see pathology cases so we always speak up regarding education and early detection. We are so fortunate to work with Brian, Ingrid and their entire team to join in the collective fight to raise awareness and find a cure.
The Oral Cancer Foundation continues to support and share stories of those who have bee diagnosed with oral, head and neck cancers. Patients are a number one priority for OCF. The website is full of information for almost every question one may have. OCF also provides a safe space in the form of a specialized support forum for patients and caregivers to ask questions and come together as a community. Dedicated members of the forum as well as the founders are readily available to assist in any way they can.
The Oral Cancer Foundation is a wonderful nonprofit with a presence that caters to patients, family members and caregivers of this disease. They are heavily invested into scientific research, fact checking and honesty. The website is chalk full of information where if anyone did have any questions, they could pull up the website and will most likely find their answer. Patients could refer to the Patient Support Forum: a wonderful forum that is anonymous, moderated and serves as an outlet for those who have questions or may just want someone to talk to. Members of OCF are here to provide all the necessary information and care they can to everyone who has any questions. I am so happy to be a part of this great organization.
I interned for this organization for several years; everyone I worked with and for was excellent and passionate about their work. I was also able to attend several events with the OCF community and was always impressed by the levels of respect and care that I witnessed. This organization tackles a very sensitive and often scary disease; the sense of OCF's comradery and support was always obvious. The people who work here care deeply about everyone affected by this disease. Would recommend.
I am Chief Technology Officer for a medical device company that sells devices to oral healthcare providers to help them find oral cancer hopefully in early stages when the prognosis for patients is so much better. As part of our ongoing efforts our company has interacted with the Oral Cancer Foundation and its founder, Brian Hill, on many occasions over the years.
Brian and his OCF organization have had, in my opinion, a profound effect on the dialogue about the importance of oral cancer screening and the critical role that front line health care providers such as dentists and hygienists have in this process. I cannot speak highly enough of the job that the OCF has done in this regard. With limited resources, the OCF has reached far and wide - from the American Dental Association to bodies such as the American Academies of Oral Pathology and Oral Medicine, to university faculties doing core clinical research around North America, to the FDA and also to about every technology company in the field of oral heath and oral cancer. It is nothing short of astounding. Brian and the OCF have worked tirelessly to promote the importance of oral cancer screening in preserving health and saving lives. The OCF was involved in early stages to support clinical research that helped establish the link with oropharyngeal cancer of the strain of HPV principally responsible for cervical cancer. Not only that, but the organization has also been involved in arguing for the importance of HPV vaccines in battling oropharyngeal cancer and for its deployment in the population to both males and females. And I haven't even mentioned the OCF website, widely regarded around North America as the best web resource there is on oral cancer.
My personal interactions with the OCF have mostly concerned the outreach of the OCF into high-tech companies, a capacity in which Brian and the OCF are uncompromising in their efforts to encourage those in industry to do what is right and speak the truth about not only what their products do but what they don't do. It is my company's privilege to have worked with the OCF over the years and to have helped in what ways we could to support the OCF and its mission.
The Oral Cancer Foundation is a truly special non-profit. I came to know about OCF when working for a manufacturer of the VELscope oral cancer screening system. OCF was tremendously helpful in educating us about the nature of the disease, the many challenges faced by oral cancer patients, the needs of the dental practices that use our system on their patients, and what we could do to ensure that our system played as great a role as possible in helping dentists discover oral cancer or pre-cancer in as many patients as possible. OCF never requested or accepted a penny of payment for the valuable services they provided. Moreover, over the years I came to see and appreciate the outstanding impact OCF on oral cancer patients and caregivers around the world. In terms of both effectiveness and ethics, OCF is truly the model that every non-profit should strive to emulate.
I have had the pleasure and honor of writing several website articles, news releases and other communications materials for the Oral Cancer Foundation over the past year or so. I could not be more in awe of the commitment of the Foundation and its founder, Brian Hill, to promoting early detection of the disease and to serving as a vital resource to oral cancer victims and their families and friends. Before Brian created the Foundation, public awareness of this surprisingly common and fatal disease was extremely low, and victims had very little access to desperately-needed information and advice. All one has to do is talk with an oral cancer victim to appreciate what a spectacular job the Foundation has done in filling this void. Particularly impressive to me is how the Foundation's online forums brilliantly allow oral cancer survivors to provide insight, counsel and comfort to more recently-diagnosed patients. The pain and suffering these amazing people have experienced is exceeded only by their compassion for their fellow victims. What many people do not realize is how tirelessly Brian works on behalf of the Foundation. For Brian it is virtually a 24/7 obsession, and his wife Ingrid also volunteers a great deal of her time despite the fact that she works full-time elsewhere. Moreover, the Hills' personal financial commitment to the Foundation has been truly above-and-beyond the call of duty, particularly when you consider that Brian's impressive track record as an entrepreneur would make it easy for him to accept a high-paying offer to run a private or public company. The impact that Brian Hill and the Oral Cancer Foundation have made to date is probably impossible to measure. However, if you speak to Brian, it is clear that this impact pales in comparison to what will be accomplished in the years to come.
When my husband was diagnosed with stage 4 SCC in 1997 there wasn't an oral/head and neck website, or any information for that matter, available to help guide us through his treatment, or answer the myriad of questions that we both had. Fortunately, we came through the process and learned a lot about this disease. Wanting to help others on their path, my husband formed the Oral Cancer Foundation in 1999. I am happy to report that over the last couple of decades OCF has helped tens of thousands of people directly; not to mention the millions who have visited the website for information, through the process, whether they are patient and/or caregiver. This valuable resource has filled a vacuum that existed, helping individuals who now have guidance and support to navigate their way through this tough disease.
Separate from its patient centric value, OCF is now a financial sponsor of peer reviewed scientists and their publications, made possible by many generous donors over the last couple of decades of its life. It's certainly a place where the things that donors wish to see in a charity they support can be found. Not just marketing rhetoric, or feel good euphemisms, but tangible measurable end result metrics.
The Oral Cancer Foundation is an outstanding organization that is laser focused on it's mission to combat oral cancers. They were early and very vocal supporters of the HPV vaccine, which can actually prevent a significant number of these cancers from even occurring. Cancer prevention always beats cancer treatment! One of the greatest accomplishments of the Foundation was their efforts to get the HPV vaccine recommended by the FDA for boys in addition to girls. This was critically important to helping break the chains of transmission along with educating the public on the types of cancer caused by this virus. They follow research on new treatments closely, which is important because the most commonly used treatments for these cancers are so incredibly debilitating to patients. And not only do they follow the research, they also support it financially and provide suggestions for future directions of research via their work with granting agencies. They are also involved with networks of dentist in terms of screening people for signs of oral cancer. This is important because most people visit their dentists more often than their doctors, and finding these cancers early is a key to survival. Another way they approach ending oral cancers is by advocating for smoking curtailment efforts, so that young people don't go down that path. Their website offers up a strong support program for oral cancer patients like me, connecting people who are newly diagnosed with the disease to those who have survived it. This charity puts the patients first and has an oversized influence for a relatively small charity. I am happy to support them in their efforts.
The passionate team at the Oral Cancer Foundation does amazing work to improve prevention, early diagnosis and treatments options for oral cancers.
This foundation has been my go to for questions after my diagnosis. Good to have a place like this to answer questions anytime of the day.
This is a great organization. They are an amazing group full of knowledgeable people. Their generosity and commitment is unbeatable.
The Oral Cancer Foundation was one of the best resources when my mother was diagnosed with oral cancer. Neither my mother or I knew anything about oral cancer. All the members are so knowledgeable and freely share their experiences with those who need their wisdom. The Oral Cancer Foundation has an abundance of warm, caring members who immediately embrace every new person. To me they're the BEST!!!! Thank you for helping us and we will in turn help others who are just starting out.
The Oral Cancer Foundation helps so many people day in and day out. They are an amazing resource for those who need help dealing with this illness.
I amassed a lot of knowledge as a caregiver from this forum. I like the fact that I am able to interact with forum members not only in North America, but in Australia, the U.K. and India. IIts reach is worldwide. The members are sympathetic, empathetic and do their best to support each other . Over the years, thousands have been helped.
Over the years OCF has stayed at the head of the pack with new information and a most helpful forum. I have gained a lot of knowledge about head and neck cancers and have made a number of friends. It's so nice to know that many others care when I am in a time of need.
This small organizations dedication to always provide facts that are science based is commendable. I highly recommend the Oral Cancer Foundation to patients and caregivers who are dealing with oral cancer diagnosis, treatments, and recovery. Other organizations should strive to emulate this outstanding organization in every way. The Oral Cancer Foundation operates on a tight budget to make the most of every donation received. Please consider giving this organization your donation.
THE ORAL CANCER FOUNDATION IS THE VERY BEST NONPROFIT IN THE US!!!! They have helped me tremendously with so many things my medical team hadnt told me. I always learn something new every time I go onto their website. The Oral Cancer Foundation is the best of the best, they deserve 10 stars!!!
My husband fought this disease for four years. During that time we found the most up to date and reliable information at this charity. People in the support group helped us almost daily, through all the ups and downs of his battle. Even the founder of OCF spent hours with us on the phone over many conversations, helping us understand treatment options, and when the conventional ideas did not resolve things, new ideas in immunotherapy that were only in clinical trials. He helped us get enrolled in one. For almost a year things looked bright and the disease seemed to retreat. But ultimately it was stronger than any treatment and this year we lost him. While our story is not the bright cheery post that I read here, I came to say that OCF stayed with us, helped us understand, helped us find new ideas to try, and ultimately mourned with us when it was over. They never asked for anything from us, they were just always there when we needed them, even on holidays when things turned suddenly south. I can’t donate to them, we are not financially capable, but in 2020 I will work with them to set up a fundraising walk in my hometown to raise money. To memorialize my husband, and to raise funds for those who were there for us. If you can donate, this charity is the real deal. Not some giant in size, but with a giants heart.
I have been part of this foundation's work for many years. I have watched them grow from a seed of an idea, to a highly impactful and well run national organization. After having this cancer and surviving; and later thriving, I wanted to give something back. The place to do that was obvious. During my journey this organization had a support group online that was the only thing like it, not just in oral cancer but in cancer in general, they were way ahead of the Internet curve. I found people like me there, and the peer to peer conversations helped me see what was ahead of me on my path. But the richness of the website content, and the details which it went into, also gave me the knowledge I needed to help make good informed decisions. They have been at the forefront of the HPV and oropharyngeal cancer issue since the link between the two was discovered, and have financially supported core researchers in this area and disseminated tons of information about it in the public arena. An educated public can find ways to have their children side step having this disease impact them. Bottom line there isn't another organization that reaches this bar of accomplishments in the head and neck / oral cancer world. I will continue to attend their walks, advocate for them in my industry (dentistry) help with their support group, and make them my charity of choice for donations, as they are a life changing organization.
I am a long-term survivor of a stage four oral cancer. I have been engaged with OCF since my early days right after treatments when I was having difficulty with swallowing speaking and all the aftereffects that those who have been radiated know about. The people, web site, and support group at OCF were instrumental in keeping me informed, and understanding work arounds for some of my most difficult problems. I was even able to call the founder of OCF on a personal line and discuss issue with him as he has been out of the lecture circuit talking about the disease and is highly informed and connected to others in the oral cancer world that might offer me assistance. Ten years have elapsed since those days. Today I have new problems that many of my doctors do not know how to deal with, all related to my high dose radiation treatments. I again turned to OCF, and again found answers and support. OCF has now been part of my life for a decade and a half when I needed them. They have always come through for me with support and answers, and importantly options that help me make better informed decisions. OCF is not a large entity, and it is significantly underfunded considering the many important things they are engaged in. I used to think that bigger was better. But this organization is now the destination of my donations because they get things in the oral cancer world done, when others with fancy websites have little to show for accomplishments in the oral cancer world. OCF is a gift. I urge others to please donate to them, they deserve to be around into the future.
I am a 15 year survivor that is having significant complications from my radiation treatments. No other organization that I have contacted understood the nature of these issues, baro reflex dysfunction, neurological issues and more. Here they get me, they have work arounds to help me, they have spent countless hours on the phone with me, and helped me understand what is happening to my life. Bigger charities had no clue what to do with me, and I rapidly learned that they only are interested in people with one of the big four cancers. Oral cancer without OCF would be an orphan disease when it comes to patient support. This is were my donations now go. They have earned every dollar that I have given them.
As a caregiver, most people and organizations do not understand that when someone gets this cancer , the whole family gets it. We have been devastated by my husbands disease, the impact on our family financially, and my personal emotional state as well. OCF understood that, they have not only helped my husband navigate through the maze of treatment options, find workarounds for issues , and ultimately get into an institution that was doing immunotherapy, when his disease did not respond well to treatments, but they have supported me separately through my issues as well. No other organization that we contacted got this. They have spent hours and hours with both of us on the phone, the support group has also helped as has the many pages of useful information on their web site. I don't know what we would have done without them. We cannot afford to donate to them right now but when our lives stabilize in the future we will. We encourage others to look at this small charity as THE place to give your gifts, they are so deserving of your support and deserve also to survive in a very competitive world of non profit charities.
The Oral Cancer Foundation is the very best charitable organization. If it wasnt for them I dont know how I would have gotten thru the harshest treatments to become a cancer-free survivor. Everyone there is always willing to help me and others with their own knowledge with so many tips all of which my medical team hadnt mentioned .
This group deserves 10 stars.
The Oral Cancer Foundation is small but mighty. Working firsthand with other volunteers, it is a group like no other. Motivated and passionate about helping those fighting oral cancer - survivors, family members, and friends alike. The walks that take place around the country are their own unique experience, dedicated to spreading awareness and fundraising for this important cause. A large percentage of donations received are in turn given back to relevant cutting-edge research, this is one of the top reasons I volunteer and donate to this cause. I wish more people knew about OCF, and the information available on the OCF website (oralcancer.org).
My husband received the news that he had oral cancer in July. I spent 17 yrs working/teaching at a dental school in the midwest but never dreamed oral cancer would be a part of my life. Once he got the diagnosis, I started scouring the internet to learn more. I came across the OCF website and quickly joined as I was able to share my frustrations and questions as a caregiver with survivors and receive support plus information. I call this group my lifeline as they have walked through this process with me.
The Oral Cancer Foundation is AWESOME! I dont know what I would have done without their help when my father was diagnosed with cancer in the base of his tongue. Thank you to everyone at The Oral Cancer Foundation for helping me to get my father thru some of the darkest days of his life.
For anyone undergoing the difficult days of surviving oral cancer, or if you are a caregiver to someone diagnosed with oral cancer, this site is unlike any other. It is the very best place to be to get all the latest, best, and most accurate information available. When my son Paul was diagnosed with Oral Cancer, he had a large lump under his tongue, and I was a basket case of worry and nerves. One day while waiting in the hospital waiting room as he was called in to get his radiation treatment, a young man sitting nearby came over to me and said "Go to the Oral Cancer Foundation's web site". He then left when he was called in for his Radiation treatment. He was he angel that led me to the Oral Cancer Foundation where I found so many wonderful, knowledgeable, and compassionate people. I was on the site during those early days of my son's recovery several times a day, and no matter what time of day or night it was, there was always someone ready to help with information and ideas and suggestions on how to help my son to survive what he was going through. There will never be words enough to describe how grateful I am to the founder, Brian Hill, and to all of the people at the Oral Cancer Foundation for my son's survival from this horrible disease. My son, Paul has been cancer-free since 12/19/06.
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.
As a dental hygienist of 24 years, raising awareness and educating about oral cancer and HPV is my passion and mission. I joined as a regional coordinator with OCF 8 years ago. OCF provides current vetted and relevant research and information for dental professionals, enabling us to better serve our patients.
My wife who has leukoplakia was getting different opinions from specialists causing
us confusion and anxiety.We called OCFin hopes of finding an expert.We spoke to Brian Hill
the founder of OCF and explained the situation to him. We found Brian to be very knowledgeable pleasant and compassionate. He spent a large amount of time and effort answering all our questions for us to make a clear intelligent decision.
Dear Brian thank you and all the people at OCF for being there to help all in need and for you being a kind and wonderful person.
Harvey and Donna
The Oral Cancer Foundation is much more than a spectacular non-profit, but also a home and safe haven to those who have been effected by this disease. Extensive information coupled with a huge online support forum makes this foundation so special and valuable in the cancer community.
OCF's incredible work in sponsoring research, advocacy, public outreach, campaigns, and awareness events set this charity at an enviable and honorable standard. Everyone involved in this foundation from the Executive Director to event volunteers has passion for the cause, all working together to change the course of oral cancer.
OCF is a well rounded and incredible non-profit. I am so privileged to be a part of this dedicated foundation.
This organization’s website is the best source of information for patients and caregivers that are going through diagnosis, treatment and the post treatment for oral cancer. In addition, support and answers to questions can be obtained through the use of the extensive online support forum.
After being diagnosed with tongue cancer in 2005 I started searching the internet for additional sources of information on Oral Cancer. I was fortunate to find The Oral Cancer Foundation which proved to be the most comprehensive and informative website on the internet.
Not only does this organization provide hundreds of pages of information, it also has a forum for patients and care givers to share their stories and get personal support from those that have been there.
At the time of my diagnosis I was a practicing dentist. (I am now retired) Through the OCF I have developed life-Long relationships with other survivors all over the world and I have been able to share the knowledge I have gained from the OCF with others. To this day every year I lecture to a class of senior dental hygiene students as part of their program. I share my story with them and turn them on to the OCF for information that they will be able to use to save lives.
In 2006 at age 50, my life was a freight train; roaring forward, very fulfilling & busy. I was 50, felt like I was 30, worked like I was 20. Then, my freight-train life ran head-long into a brick wall.
The "toothache" I'd sought treatment for was stage IV cancer in my jaw. Aggressive, very poor prognosis, and treatment, if successful, would be life-changing. Disfiguring, horrible suffering during treatment, with only slim chances of survival for more than a year or two afterwards.
I've always been a cautious optimist, but there seemed to be very little to be optimistic about. Very low survival rates, horrific treatment modalities, nothing about it sounded in any way appealing. Did I really want to go through that? Was there any POINT in going through that if all that would happen is a short extention of my life, filled with even more misery? I knew next to nothing about oral cancer, and I was terrified.
I knew I had to get to know my adversary, intimately, if I was going to fight. It didn't take long before I stumbled across what would become an integral, important, engaging source of understanding, advice & enormous compassion & encourgement; the Oral Cancer Foundation.
From the first moments, I became part of the OCF "family", and they became a part of mine. Within hours, I was talking to people about my deepest fears and feelings; total strangers earlier, and now close confidants.
It's been said that the only person who TRULY understands what a cancer patient goes through is another cancer patient. Even more important, if that other cancer patient suffers(ed) from the same type of cancer.
The OCF gave me the most important part of the "survival equation", and the part that was missing; the OCF gave me HOPE. I learned and came to appreciate that even with the odds stacked very much against me, many others had travelled that same road, and come out the other side, intact and able to live life.
The year that followed was horrific. Surgery...17 hours worth...a heart attack, a coma for two weeks. Radiotherapy, chemotherapy for months. sicker than I'd ever been in my entire life. Then physiotherapy, speech therapy, scans, tests, ad nauseum. Through it all, my "family" with the OCF was there for me every step of the way. Offering suggestions, encouragement, empathy. Strategies on overcoming some of the difficulties I had. There too, when one of our "family" lost their battle. We grieved together, we celebrated together...we were, and are "family". Some of my closest friends in the world are people I've met through OCF.
The Oral Cancer Foundation is a modest group of people helping one another deal with a common enemy. Together immeasurably stronger than each person indivudually. Their good work continues, and the demands increase, year after year. This organization has participated and played a hugely significant role in improving the survival rates for Oral Cancer around the world. I can think of no more worthy a cause than this.
My husband was diagnosed 3 times, with different oral cancers, first in 2002, another a couple years later, and a cancer on his lip in 2005. They were all undifferentiated, and contained, so he never had radiation or chemo, but instead, extensive surgeries removing a few teeth, jaw shaving, tissue, and some lymph nodes (that were not cancerous). He has had good check-ups since then. I am writing because he asked me to. The Oral Cancer Foundation and its forum were a God-send, with some of the most helpful, kind people you could ever hope for. It made a world of difference to talk to people who had experience with this disease, who could offer advice and comfort at a time when it was badly needed. I wish I could give the foundation more than 5 stars, because they truly have helped more people thru probably the worst times of their lives.
The OCF is a vital connection for people who find themselves with the numbing news of having oral cancer. It is a lifeline to offer hope, advice, empathy, friends, and to answer the infinite questions, repeatedly, to those diagnosed. There have been invaluable friendships formed among people who have lived through the treatments together and have shared their experience with newcomers. There are truly some "angels" in the forum who have guided the members for years, putting in more time than a full time job, to assist folks through the process of getting to "the new normal". OCF is a Godsend.
When I was going through Oral cancer, the Oral Cancer Foundation was a big help to me. I am currently a survivor of 8 years. I know OCF will be there for me if and when I ever needed anything again.
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!
The Oral Cancer Foundation is what pulled me thru my battle with oral cancer several years ago. I dont know where I'd be today without their guidance. Oral cancer is not a widely known disease. I never heard of it before I was diagnosed. The compassionate support members give other can not be replicated. This website helps oral cancer patients and caregivers from all over the world. I wish there were more websites that modeled this great organization. Two thumbs up!!!
When I was first diagnosed with oral cancer I had no idea what it was. The Oral Cancer Foundation's members embraced me and taught me everything I needed to know along with providing me with the emotional support I needed. OCF is a small organization that provides worldwide support for oral cancer patients and caregivers. I consider OCF to be the very best nonprofit out there!!!!
The Oral Cancer Foundation is the very BEST small nonprofit organization!!! The OCF online patient support group helps patients and caregivers all over the world with up to date and correct medical info and support. This nonprofit establishment also helps fund many cutting edge research projects. For example, some are dedicated to furthering knowledge of HPV which is the fastest growing segment of newly diagnosed oral cancer patients. The Oral Cancer Foundation has created alliances with dental offices across the US to do thousands of free oral cancer screenings every April for Oral Cancer Awareness Month. This helps to find oral cancer early when its the easiest to treat.
My husband was diagnosed with tongue cancer in 2007. I literally don't know how we would have made it without the oral cancer foundation. We were lost as to how to proceed and the oral cancer foundation gave us the tools to navigate the choice of treatment. After treatment we turned to OCF for advice on nutrition and issues with swallowing and feeding. Because of radiation, my husband had to have his jaw replaced last year. The advice of OCF was instrumental in both of us surviving both physically and emotionally. I can't say enough good things about these incredible people. They deserve 50 stars as far as I'm concerned.
Mary and John McCloskey
I was diagnosed with an HPV+ oral cancer that had to metastasized to one lymph node in March 2017. The Oral Cancer Foundation provides an outstanding *moderated* board by other cancer survivors.
Using the board I:
- Selected a certified cancer center 4 miles from my house by late March 2017
- Chose surgery + radiation rather than radiation + chemo by May 2017
- Learned "best known methods" from previous patients - I did NOT need a feeding tube, I ate solid foods until my 6th week of radiation, and I did not have significant weight loss.
- I had very little skin damage compared to most patients (for example, my skin did not peel despite 30 radiation treatments.)
- Followed my speech and swallowing exercises to the letter and did not lose any range in how far I could open my mouth and had no loss of function in speaking.
- Was able to get feedback on questions as they occurred.
- Was given realistic expectations from former patients (e.g. taste loss, salivary gland function) that was glossed over by the doctors.
I highly recommend the Oral Cancer Foundation for anyone with oral cancer and their support.
The best thing about the non-profit is that they provide a moderated forum. This prevents information that is inaccurate or misleading from confusing you at a very difficult and confusing time at your life. OCF is the place I could count on to get quick and accurate answers to our questions during and after treatment.
There is absolutely no question about whether I would be here now if not for the Oral Cancer Foundation. I would not be. It is now 12 years since my first oral cancer diagnosis and not a single day goes by that I don't feel grateful to OCF for their support, the friendships made and the ongoing help that I know will instantly be there when I need it. That help may come in the form of high quality information with the latest techniques and information on procedures front and center, or it may be a shoulder to cry on in the patient and survivor forum. One never really 'gets over' oral cancer. We live with it every single day - in our speech - in our eating abilities (or inabilities) - in our relationships - and in the long term effects of some of our treatments. Not one day has ever gone by that I could say I was "over" oral cancer, and the Oral Caner Foundation has been there with me for every step of the way. My OCF name is "Pandora". I chose that because Pandora's box ended up with just one thing in it - HOPE. To me that was where I was at when I joined - HOPE. I continue to HOPE - for myself and all oral cancer warriors.
In 2004 I was diagnosed with tongue cancer. This was a disease that NO ONE had ever heard of at the time - myself included. Yes, I was a smoker, and I was always fearful of lung cancer - but Oral Cancer?? Who had ever heard of that. I felt lost. Alone. The Oral Cancer Foundation became my source of information and comfort. There I met the most amazing people who knew of what I spoke.
When I was diagnosed with a recurrence in 2007, not one person on OCF gave me the sad "puppy dog eyes" or exhibited the "oh you poor thing" which went with said puppy dog eyes. They walked with me - helped me to find factual documentation and look at some care which perhaps wasn't the norm at the time. Due to my OCF Family's suggestions, I pushed for a second course of radiation and my Radiaiton Oncologist stretched protocols at the time to offer this.
Because of this double radiation I am here today. I just had my 5 1/2 year CT post treatment for my Second bout of Oral Cancer and I am 9 1/2 years past treatment for my First oral cancer. No question I would not be here without OCF.
While my cancer was likely due to the more traditional (old school) reasons for Oral Cancer - i.e smoking and drinking alcohol, I have come to be educated and extremely concerned about the rising rates of Oral Cancer due to HPV. This type of cancer appears to hit young people hard and it breaks my heart to think that they could have likely been cured - IF they had known to seek early detection; IF they had known Oral Cancer even existed.
OCF has work to do and it diligently doing anything and everything it can to spread the word. In order to do this - and save many young lives - they need our support.
The Oral Cancer Foundation is THE BEST Non Profit I have ever heard of. No questions about that.
Thank you OCF for my Life. Thanks to you, I fully expect to see my 60th Birthday in March 2014 :)
I found OCF in 2007 when I was diagnosed with cancer. They provided much needed information and additional support that was needed.OCF goes" above and beyond" what most other cancer related non-profits do for the cause. You can sign n 24 hrs a day and find answers and support from those who have been thru the same or similar treatment. OCF is there for anyone needing advice and support regardless of income or status.
This is a model non-profit organisation which helps oral cancer patients, survivors and caregivers throughout the United States and in the wider world. It has helped me through two occurrences of oral cancer and I hold the managers and moderators in the highest esteem. They give information but also the emotional support that is necessary for us when we go through this devastating disease.
I found the Oral Cancer Foundation in 2009 after major tongue surgery and returned there this year after a recurrence, another surgery and radiotherapy. My life would be a lot harder if I didn't have the Patient Forum to call on when times get tough. Other patients and dedicated volunteers give advice and support about all manner of treatments, especially radiotherapy which can be particularly dire when directed at the head and neck.
I'm impressed by the overall philosophy and tone of the site. The Forum is beautifully moderated and newcomers are welcomed with sympathy and ready answers to their questions.
It's also heartwarming to feel a link to oral cancer patients all over the world. No one wants to join the oral cancer community but if your life takes this path, the Oral Cancer Foundation makes it so much more bearable.
I found the Oral Cancer Foundation near the end of my Husbands radiation/chemo treatment for his Base of Tongue cancer. How I wish I had found the site earlier. Such a wealth of Information .
The Patient Forum was a god send. Such supportive and helpful advice on all manner of treatment and its side effects. I have given OCF's details to the ENT department at our hospital in New Zealand. I spoke to the Head &Neck cancer Nurse specialist too and really recommended that she look at OCF's site and that she pass on the details to all new Head&Neck cancer patients. The information is accurate and gives a great overview of treatment and what to expect. I found the support of other patients and their Caregivers incredibly helpful and supportive. This fabulous group got me through a recurrence too.
When dealing with a cancer, online support and advice is what you need. I found it at the Oral Cancer Foundation .
Just a fabulous site. When we got the diagnosis of base of tongue cancer we knew absolutely nothing about this type of cancer and how it was treated. . I literally learnt everything I needed to know from this site and from its Patients Forum. Far more information and practical help than we ever got from our Oncology team. The support from other Patients and Caregivers was essential to our progress and to my peace of mind.
I simply could not have got through without the support of the Oral Cancer Foundation.
4 years later I am still getting advice and support. I recommend this support site to all.
The OCF is THE online resource for head and neck cancers. I found them during recovery after surgery and radiation, joined immediately and was instantly embraced into a caring and helpful family. There is a wealth of information there and I know they sponsor research and work with patient outreach all over the country and even abroad. But what really sets the foundation apart are the people. I urge any H&N cancer sufferers and their loved ones to make use of this amazing place.
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.
The Oral Cancer Foundation has helped me and my family with my fathers tongue cancer. The online message board has been a huge help in answering our questions and helping us to get my father thru some very dark times. I cant thank the dedicated volunteers enough for all the help they have given us this year. Other charities should be more like The Oral Cancer Foundation. They are the best of the best!!!
OCF has been a life saver in helping me to get thru my fight with oral cancer. I cant say enough positive things about this small organization. They may be small but OCF helps hundreds of people from all over the world every week.
After being diagnosed with T4 tonsil cancer I discovered OCF website. Sharing experiences with others who are at different stages of the journey, from diagnoses onwards and everything that involves, has been a huge factor towards helping me deal with my own battle. Now that I am in remission and doing well, I want to give the same help and support that people, who use this site have given me. This forum is amazing and I cannot recommend it enough to all people whose life changes overnight by the C word and their families.
Through this organization I receive much needed emotional support as I live through the oral cancer journey. Also it has given me factual information about my condition and helped me view my expectations realistically. We have a bond.
As soon as I was diagnosed on June 5, 2015 I hit the internet to learn all I can about my type of cancer and what I was potentially in for. The message board on this site and all of the literature has been a life saver and sanity saver! I am currently on there starting a new thread as I begin to prepare for a new phase of my treatment.
I was diagnosed with tongue cancer earlier this year. Finding he Oral Cancer Foundation has been a wonderful resource and support for me. I cannot imagine having to go through this ordeal without this foundation!
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.
As a dental hygienist, part of my daily job is to educate patients about oral cancer. The Oral Cancer Foundation has been an incredible resource for vetted, up to date, and reliable information related to trends, risk factors, current research and best practices. After volunteering at community screening events, one of my own family members was diagnosed with oral cancer and I was blessed that I was able to refer him to this foundation as he fought one of the toughest battles of his life. Information he received truly made a difference in his treatment decisions and thankfully he is alive and thriving today! With 24/7/365 access, OCF is truly a top rated non-profit serving the public, patients, and the dental/medical communities!
There are not all that many places to share the experience of having a portion of your tongue removed. Many less to share that experience with people who provide the support and encouragement that I found at the OCF. It is loaded with information, compassion and it's done with sincerity from people who have been there. It provided me with somewhere to go and people to turn to in some very dark and scary times. I will be sticking around to try to contribute in whatever way I can. I love the OCF!
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!