OCF In The News

The Oral Cancer Foundation’s Founder, Brian R. Hill, honored by the Global Oral Cancer Forum – International oral cancer community honor his accomplishments in the field.

Source: www.prnewswire.com
Author: The Oral Cancer Foundation
 

Bryan R. Hill receiving the award at the Global Oral Cancer Forum. (PRNewsFoto/Oral Cancer Foundation)

NEWPORT BEACH, Calif., March 10, 2016 /PRNewswire-USNewswire/ — At the recent Global Oral Cancer Forum (GOCF), Brian R. Hill, Executive Director and Founder of the Oral Cancer Foundation (OCF), was honored for his work as an advocate and innovative thinker in the oral cancer arena. The GOCF organizers and community awarded Hill the 2016 Global Oral Cancer Forum Commitment, Courage and Innovation Leadership Award for his dedication and contributions to the field of oral cancer over the last 18 years. Upon accepting the award, Hill received a standing ovation from those in attendance, which included global oral cancer thought leaders, researchers, treatment physicians, other non-profit organizations and representatives from various government agencies, including the National Institutes of Health / National Cancer Institute, and the World Health Organization (WHO).

When asked about being honored Hill said, “In the beginning and for many years I was alone at OCF and it was just the seed of an idea. Those grassroots efforts matured into a robust network of important relationships with a common goal. Today OCF is so much more than just me and my singular efforts. Through the benevolence of the many OCF supporters, particularly in the RDH, dental/medical professional communities and survivor groups, OCF has grown into a powerful national force for proactive change of the late discovery paradigm, access to quality information, disease and patient advocacy, funding of research, and patient support.” Hill acknowledges that he had the mentorship of some of the brightest minds of the non-profit world to build his understanding of appropriate governorship of an entity such as OCF, as well as support from core researchers and treatment professionals in the oral cancer arena. “To paraphrase someone far more famous, if I was able to see farther than others had going before me, it was because I stood on the shoulders of many highly accomplished others who helped me achieve my goals,” says Hill.

Hill, a stage four oral cancer survivor, became a student of the disease after his own diagnosis left him looking for answers. Since founding OCF and overseeing the path and initiatives of the foundation for more than a decade and a half, Hill often finds the advocacy role suits him well. He has championed anti-tobacco legislation within the political system, and is an advocate at various government entities such as the CDC regarding vaccination of boys against the virus known to be the primary cause of most oropharyngeal cancers.  He also sits on two National Institutes of Health (NIH) oversight committees—one at the National Cancer Institute (NCI), which oversees clinical trials in immunotherapies in head and neck cancers, the other at the National Institute of Dental and Craniofacial Research (NIDCR) reviewing trials looking at long-term outcomes and complications of treatment in head and neck cancers. In addition, Hill still one-on-one counsels patients, participates in OCF’s online Patient Support Forum, and is often the voice for a community that has lost its own, through many diverse media interviews and lectures.

While OCF has received many awards for its advocacy work and contributions to the battle against oral cancer, including recognition from the NIH/NIDCR, WHO, Great Non-Profits, various universities and professional medical and dental societies, and even Internet guru Mashable.com for innovations in applying technology to serve its health oriented goals, receiving recognition from this forums organizers and some of the  leading authorities on oral cancer in the international community is particularly meaningful. Those in attendance are recognized as experts in the field and understand the challenges and importance of the work OCF has undertaken. Sponsored by the Henry Schein Cares Foundation, the benevolent arm of the powerful Henry Schein Inc., known for its long-term commitment to improve issues related to oral care, The Global Oral Cancer Forum’s vision is to build partnerships that will promote the changes required for a substantial impact on the incidence, morbidity, and mortality of oral cancer worldwide. The importance of the Schein organization’s leadership in creating this venue cannot be overstated.

Top oral cancer experts and advocates from around the world, representing countries as far away as Japan, China, and India as well as from the Americas, convened over the weekend to attend the inaugural forum. Attendees included clinicians, scientists, epidemiologists, activists, public health experts, as well as OCF Directors and other NPO organization heads who are working hard to find impactful avenues to reduce the global oral cancer burden. Attendees met to exchange ideas and learn from one another about what is and isn’t working in the global realm of this disease. Delegates from thirty-three countries presented new research findings and discussed their unique challenges and approaches to understanding and addressing one of the leading burdens of the cancer world.

Globally, the incidence rate for oral cancer is growing and has reached what many experts are calling epidemic proportions. This year approximately half a million patients will be newly diagnosed with an oral or oropharyngeal cancer. Among the topics discussed by GOCF panelists were the rise in disease incidence and the regional disparities and factors affecting global populations. Communities throughout much of South East Asia report a high percentage of the population chewing betel and areca nut, a significant risk factor for the development of oral cancer. Meanwhile in the U.S. and other developed countries the prevalence of the HPV virus is the leading contributor to the rising rates of oropharyngeal cancers. Identifying these differences is vital to the development of effective prevention, public policy, and treatment strategies. Advancement of a universal understanding of what the problems are and what initiatives are working around the globe, reveals commonalities, and within them the group will find its beginning joint efforts to effect change.

Looking forward there is clearly much work to be done. The good news is that there are significant strides being made in research and treatment; but balancing those positives, there are also significant shortcomings in current governmental policies, prevention, and public awareness and understanding. Hill said, “While I and OCF are very proud to have been chosen by the organizers, and the global oral cancer community to receive this award, it only serves to motivate us to strive to accomplish more. We have built relationships here that will translate into new avenues of endeavor for OCF in the future.” Jamie O’Day, OCF’s Director of Operations, also attended the conference and spent her time networking with her counterparts from around the world. Many new ideas were garnered from these discussions that will be applied in future OCF initiatives and support OCF’s mission to reduce the suffering caused by this disease both nationally and globally.

About the Oral Cancer Foundation:
The Oral Cancer Foundation, founded by oral cancer survivor Brian R. Hill, is an IRS registered non-profit 501(c)(3) public service charity that provides vetted information, patient support, sponsorship of research, as well as disease and risk factor reduction advocacy related to oral cancer. Oral cancer is the largest group of those cancers that fall into the head and neck cancer category. Common names for it include such things as mouth cancer, tongue cancer, tonsil cancer, head and neck cancer, and throat cancer. The Oral Cancer Foundation maintains the websites: www.oralcancer.org , www.oralcancernews.org , www.oralcancersupport.org , which receive millions of hits per month. Supporting the foundation’s goals is a scientific advisory board composed of leading cancer authorities from varied medical and dental specialties, and from prominent educational, treatment, and research institutions in the United States. The foundation also manages the Bruce Paltrow Oral Cancer Fund, a collaboration between the Paltrow family represented by Ms. Blythe Danner (Paltrow), Gwyneth Paltrow, Jake Paltrow and the Oral Cancer Foundation.

Media Contact: Jamie O’Day / The Oral Cancer Foundation (949) 723-4400 jamie@oralcancerfoundation.org

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Possible marker for recurring HPV-linked oropharyngeal cancers

Source: www.eureka.org
Author: John Hopkins Media Contact: Vanessa Wasta
 

A look-back analysis of HPV infection antibodies in patients treated for oropharyngeal (mouth and throat) cancers linked to HPV infection suggests at least one of the antibodies could be useful in identifying those at risk for a recurrence of the cancer, say scientists at The Johns Hopkins University. A report on the study is published in the February issue of Cancer Prevention Research.

HPV infections, which are virtually all sexually transmitted, are responsible for the recent rise in the incidence of oropharyngeal cancers in the United States, according to the National Cancer Institute, and now account for about 80 percent of these cancers.

People with HPV-positive tumors of the throat, base of the tongue and tonsils have higher overall survival rates compared to people with similar tumors not caused by HPV, but studies show that more than 25 percent of HPV-positive cancers recur–usually within the first two years after treatment.

“There are currently no reliable tests available to detect early recurrence, so we hope to find a biological marker that could help identify those most at risk,” says Carole Fakhry, M.D., M.P.H., associate professor of otolaryngology-head and neck surgery at the Johns Hopkins University School of Medicine and member of the Johns Hopkins Kimmel Cancer Center.

For the new study, Fakhry and her colleagues focused their attention on the antibodies, or immune system protein the body produces to fight HPV-related cancer proteins. One such antibody, called E6, is strongly linked to the diagnosis of HPV-positive oropharyngeal cancer.

Levels of the E6 antibody should fall when a patient is treated and cured of their cancer, Fakhry and her colleagues reasoned, so an increase in a patient’s E6 levels after treatment might indicate a higher risk of the cancer returning.

To find out, the researchers looked back at the health records and blood serum samples of 60 patients with HPV-positive oropharyngeal cancer and a median age of 56, mostly Caucasian men, who were treated at The Johns Hopkins Hospital. Some 43 of the patients had samples taken before their treatment, 34 had samples taken up to six months after therapy, and 52 had samples taken six months or later after therapy. Among the 60 patients, Fakhry and colleagues identified six cases of recurring cancer within an average of 4.4 years of follow-up after treatment.

The scientists looked at a variety of HPV cancer cell antibodies in these patients and discovered that the average level of most of these antibodies was lower after treatment. Patients who had high levels of E6 antibody before their treatment were seven times more likely than those with lower levels to have their cancer return, they also found.

Fakhry says the study is a promising start toward finding a way to identify patients most at risk for a cancer recurrence through the use of a blood test, but much more data are needed to confirm E6’s usefulness as a biomarker. One of the best ways to proceed, she says, would be to conduct a study of the antibody on a large group of patients at the start of their treatment, drawing blood at a series of predetermined points during their therapy to examine E6 levels.

At the moment, these HPV antibodies are not measured routinely in patients, so it is difficult to estimate the costs and time needed to conduct such a “gold-standard” trial, she notes.

More research is also needed to know whether such tests would be useful in determining the path of a patient’s follow-up care, such as whether and how often a patient might need imaging or clinical exams to watch for a cancer’s possible return.

“Potentially, a low-risk patient may need less stringent surveillance while a high-risk patient may require more intense imaging,” Fakhry explains. “But this is far away from clinical practice, as we would really need to understand whether this hypothetical approach [with E6] would improve lead time to diagnosis of recurrence and survival outcomes.”

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Other Johns Hopkins scientists who contributed to the research include Jesse Qualliotine, Zhe Zhang, Nishant Agrawal, Daria Gaykalova, Justin Bishop, Rathan M. Subramaniam, Wayne Koch, Christine Chung, David W. Eisele, Joseph Califano and Raphael P. Viscidi.

Funding for the study was provided by the Oral Cancer Foundation and the National Institute of Dental and Craniofacial Research (P50DE019032-13).

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

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Rodeo Insider: Cowboy takes it on himself to ride home a message

Source: www.star-telegram.com
Author: Brett Hoffman
 
0125 rodeoBronc rider Cody Kiser is trying to encourage cowboys to abstain from tobacco. Richard W. Rodriguez Star-Telegram

 

In a day when rodeo riders are approaching the sport from an athletic standpoint more than ever, there’s a heavier emphasis on physical fitness and many competitors are taking a closer look at abstaining from substances such as alcohol and tobacco.

One cowboy attempting to send a message about abstaining from frequent tobacco consumption is bareback bronc rider Cody Kiser.

“A lot of these cowboys don’t smoke or chew, and if they do, it’s really rare,” Kiser said. “A lot of the guys consider themselves as athletes. So they want to keep their bodies at an optimum performance and they don’t want to do anything that would break them down.”

When the Fort Worth Stock Show conducted the opening performance of its 16-day Professional Rodeo Cowboys Association show on Friday, Kiser turned in a bareback score of 80, the highest marking of the night.

As he competed in the renowned rodeo, Kiser wore a patch on his shirt that said: “Oral Cancer Foundation.”

The foundation’s website lists Kiser and a spokesman and states: “The western/rodeo environment has had a long-term relationship with tobacco, and until 2009 the PRCA had a lengthy history of tobacco sponsorship money. While that has ended, tobacco use, and smokeless/spit tobaccos still thrive in the sport. While adults have the right to make any lifestyle choice, they inadvertently expose impressionable young people to what are sometimes harmful habits though poor examples like the use of tobacco products. This is particularly harmful as kids look up to athletes.”

Kiser, 25, who is from Carson City, Nev., aspires to set a great example.

“My message is for the younger generation, to expand the sport of rodeo and help it become more mainstream,” he said. “Rodeo can be like NASCAR. When NASCAR started getting rid of most of their alcohol and tobacco sponsors and then started bringing in sponsors such as Tide and Kellogg, which are more family oriented, then the sport exploded. Today, there’s so much more money in NASCAR and it can become the same for rodeo.”

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.
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Forward Science and Oral Cancer Foundation partner in video to spread oral cancer awareness

Source: www.DentistryIQ.com
Author: DentistryIQ Editors
 
Click here to view Carol Layer’s story, told by her daughter Rachel
 

In an effort to increase awareness about the importance of annual oral cancer screenings, Forward Science, the creators of OralID, and the Oral Cancer Foundation have partnered to share the story of a family’s loss after a protracted and difficult battle with oral cancer.

In a video narrated by the daughter of an oral cancer victim, the importance of regular/routine oral cancer screenings is stressed, and the daughter shares a first-hand view of why early detection is critical.

To view the touching story of Carol Layer’s fight with oral cancer, told by her extraordinary daughter, Rachel, visit http://www.oralid.com/carolsfight.

“Until there is a cure, the best solution is early discovery. Early detection can not only save people’s lives, but preserve the quality of life.” Rachel continues to compete in marathons and relay races in her mother’s memory, wearing “Carol’s Fight” on her shirt in every race. She emphasizes the importance of sharing her mom’s story with the world, with the hope of preventing future stories like her own.

She said, “I certainly learned a lot about life and death and what it meant to be resilient through her, and I hope my mom’s story carries forward to people.”

At 44 years old, Carol Layer had no traditional risk factors (alcohol or tobacco use) and was not a patient who was in the high-risk category for oral cancer. Carol found a lesion on the side of her tongue and decided to have it examined by her dentist. After numerous referrals, and even a negative biopsy, Carol’s worst fear became a reality: she was diagnosed with Stage IV oral cancer. She fought oral cancer for 9 long years before sadly losing her battle in 2011. Carol is survived by her husband and two children. Oral cancer kills one American ever hour, and it continues to affect patients who may not have traditional risk factors. The key to lowering the number of fatalities due to this vicious disease is the discovery of lesions or suspicious tissues before they progress into cancer.

With the oral cancer screening devices available today, such as the OralID, many times clinicians may now have a way to discover abnormalities before they are visible with the naked eye.

Forward Science is a privately held medical device company based in Houston, Texas. With the launch of OralID and CytID, Forward Science provides dental offices with a complete oral health protocol, entitled F.A.C.T. (Fluorescence Assessment and Cytology Test). For more information, go to www.oralid.com or call (855) 696-7254.

The Oral Cancer Foundation, founded by oral cancer survivor Brian R. Hill, is an IRS registered non-profit 501(c)(3) public service charity that provides information, patient support, sponsorship of research, and advocacy related to oral cancer. The Oral Cancer Foundation maintains the web site: www.oralcancer.org.

This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

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A cancer on the rise, and the vaccine too late for Gen X

Source: www.cnn.com
Author: Martha Shade
 
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(CNN)The vaccine given to prevent cervical cancer in women could end up saving men’s lives, too.

Evidence is mounting that the HPV vaccine is also effective in preventing other HPV-related cancers, including those of the head and neck. Although most people who get HPV do not develop cancer, rates of HPV-related head and neck cancers are dramatically rising for men aged 40 to 50, according to Dr. Maura L. Gillison, the Jeg Coughlin Chair of Cancer Research at the Ohio State University Comprehensive Cancer Center.

When Gillison recently gave a presentation showing the increasing rate of HPV-related head and neck cancer among men, her audience was shocked. “I’ve never shown a slide where the audience gasps,” she said.

Related: Yes, oral sex can lead to cancer

“The risk of getting this cancer is strongly related to when you were born. If you are currently a 40- to 45-year-old man, your risk of getting this cancer is dramatically higher than a 40- to 45-year-old man three or four decades ago,” Gillison said.

Today’s 40- to 50-year-old men have had more sexual partners and have engaged in more oral sex than previous generations, according to experts, significantly raising their risk of an HPV-related head and neck cancer.

Actor Michael Douglas made headlines in 2013 when he announced he was battling an HPV-related cancer and that he got it from performing oral sex. Douglas was 68 when he was diagnosed, but many of the men being diagnosed with these HPV-related cancers are much younger.

What’s a Gen X’er to do?

HPV is usually acquired when young. It can lay dormant, and most oropharyngeal cancer (a type of head and neck cancer) is diagnosed decades later, beginning around age 40 to 50. And the more partners you have, the greater your risk.

HPV vaccines weren’t recommended and approved in the United States until 2006. And the vaccine was not even recommended for boys until 2011.

So what’s an aging Gen X’er to do?

“You’re starting to get colonoscopies; you’re starting to get checked for prostate cancer. This is one more thing to add to that list that you really have to watch for,” said Brian Hill, founder of the Oral Cancer Foundation.

Warning signs of HPV-related head and neck cancer

• Persistent lump on neck

• Persistent earache on one side

• Swelling or lump in the mouth

• Chronic sore throat

• Difficult or painful swallowing

• Change in voice

Source: Oral Cancer Foundation, Dr. Carole Fakhry

Symptoms of HPV-related head and neck cancer include a change in voice, a sore throat that doesn’t go away, an earache on one side and difficult or painful swallowing.

Hill’s story is typical: His doctors initially assumed he had an enlarged lymph node due to an infection. Two doctors gave him antibiotics before he was diagnosed with late-stage oropharyngeal cancer. His experience led him to form the Oral Cancer Foundation.

Finding the disease at an early stage is lifesaving. When it’s diagnosed early, these HPV-related cancers are survivable, according to Dr. Carole Fakhry of the Johns Hopkins Head & Neck Cancer Center. “If you have a lump in your neck, make sure to get checked.

“A very common story is: ‘I was shaving and I noticed this lump in my neck,” she said. “And he goes through two or three rounds of antibiotics and then someone finally thinks about cancer.”

‘Dental hygienists are becoming the best screeners’

Traditionally, cancers of the head and neck were often linked to alcohol or smoking, and these non-HPV cancers tend to be located at the front of the mouth and the voice box. Incidence of these cancers are dropping.

“The truth of the matter is that smoking-related cancers are declining,” Fakhry said. “On the other hand, cancers related to HPV are increasing.”

HPV-related cancers usually originate in the back of the mouth. “Most of these cancers are tonsils and back-of-tongue cancers,” she said. “Tonsils are basically these crypts, and tumors grow deep within these crypts, so these tumors can be hard to find.”

Since tumors are often hidden, dentists and dental hygienists are becoming the first line of attack. Men may also be more likely to visit a dentist regularly than a doctor, according to Hill.

“Dental hygienists are becoming the best screeners for this. They’re becoming the point at the end of the spear when it comes to screening and finding abnormalities,” he said.

Dentists and hygienists are encouraged to look for telltale signs of HPV-related cancer: asymmetrical or swollen tonsils, or a lesion in the back of the throat. But these cancers are notoriously tough to spot and tend to be diagnosed after patients develop a lump in the neck.

So what can you do?

“Make sure you get your kids vaccinated (for HPV),” Fakhry said.

Dr. Dan Beachler, lead author of a new study that found further evidence the HPV vaccine protects against multiple types of HPV-related cancers, agrees: “We still don’t know that much about oral HPV. Primary prevention through vaccination might have the most potential.”

Besides the cervix and the head and neck, some strains of HPV can also lead to cancer of the anus, penis and vulva.

A preventive HPV vaccine is most effective when given to children before they become exposed to HPV. The three dose series is recommended at age 11 or 12.

Initially recommended just for girls, the Centers for Disease Control and Prevention now recommends that boys be vaccinated, too. In addition, vaccination is recommended through the age of 26 in women and through age 21 in men who were not vaccinated previously.

“Young people do not avoid oral sex. That being a given, the best thing we can do is increase the vaccination rate. The second thing we can do is be highly aware of signs and symptoms,” Hill said.

And don’t panic. Although HPV-related cancers are on the rise, they’re still uncommon.

“Even though the rates are dramatically increasing, it’s still a relatively rare cancer. We don’t want to create a panic. We just want to raise awareness,” Gillison said.

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Patient Support in Oral Cancer: From Sydney to New York to London, survivors and patients interact through an important portal to get through difficult times

Source: www.prnewswire.com
Author: Press Release
 

NEWPORT BEACH, Calif., Sept. 28, 2015 — The word “cancer” will incite fear in anyone. When that word comes at the end of a sentence that began with your name, the impact can be life changing. “I had a great job, a beautiful house and a happy family life,” recalls oral cancer survivor and Oral Cancer Foundation (OCF) Director of Patient Support Services, Christine Brader. “All that changed once I got sick.” Those affected by oral cancer, like Christine, are saddled not only with the physical challenges of treating and surviving the disease, but they must also live with the emotional uncertainty and anxiety that accompanies a diagnosis. OCF’s Patient Support Forum (oralcancersupport.org) was created specifically to provide patients with the information, guidance, and support they need to face a cancer diagnosis. Now in its 15th year, it has helped tens of thousands navigate a difficult path.

It was nearly 16 years ago that oral cancer survivor and OCF founder Brian Hill began his search for answers. “When I was first diagnosed,” Hill recalls, “I was scrambling for the right information. Once inside the treatment world I was faced with decisions about which treatment path was right for me, uncertainties of what would lay ahead, the arrival of complications unexpected, pain, and ultimately a sense of the loss of control and a resulting fear.” While hospital support groups and some online chat rooms existed at the time, they fell short of providing the insights, guidance and accessibility necessary to have real benefit to a newly diagnosed cancer patient undergoing treatment. “My problems were complex and changing daily. Every day it seemed that something new was occurring that complicated matters, and I needed to talk with someone who could help me digest everything from the new medical terminology, to dealing with side effects of what I was undergoing.” It was through building relationships with other survivors and exchanging stories and information that Hill was able regain hope and envision life after cancer.

In 2001, seeing a need for patients to connect with one another, Hill worked to develop an interactive online forum where patients and survivors could share their knowledge and tell their stories. Christine Brader joined the forum after her first oral cancer diagnosis in 2007. “When I was diagnosed I didn’t know which way to turn, and by finding others who had gone through it, I gained significant peace of mind,” she recalls. “After my third cancer recurrence, I lost 65 pounds, was hospitalized twice for dehydration and malnutrition and was ready to quit. The doctors don’t always prepare patients for the realities of the difficult treatments.” It was the advice from other survivors, words of encouragement and support from the OCF forum community that convinced Christine to continue her treatments and gave her hope. “There’s a whole world of people who have gotten through it and survived, they are living in a world after cancer and are thriving” she says. “Given the extensive disfiguring surgeries, and compromises that I would be forced to live with, I was uncertain if there was even a place for me in the world after fighting to survive. Single, unable to work in my previous vocation, I could not wrap my mind around how I would fit back into a world where everything from esthetics, to the ability to speak clearly carry so much weight. But through this online vehicle, I built friendships, and through one person in particular I was repeatedly told that there can be a rich vibrant life after this terrible cancer, which can leave its visible damage even after survival, no matter how different I was after it all. The transition was not easy, but they were right. Life after my battle is rich in relationships, and meaningful work.” Now, as the patient support administrator for OCF, Christine offers her experience-based insights and emotional support to others just beginning their own battles.

Unlike public chat rooms and social media based groups, OCF’s Patient Support Forum was designed with the users’ privacy and safety in mind. OCF’s forum users’ personal information will never be marketed to by outside companies, and they will never be exposed to advertising; both considerations associated with social media platforms. Anonymous screen names protect privacy and facilitate an open dialogue for difficult topics such as intimacy and depression. “It was important to develop rules to ensure that the information on the forum is reputable, and accurate. Misinformation can facilitate poor decision making, and harm people,” says Hill. To that end, the forum is heavily monitored by volunteer staff with diverse medical backgrounds including dentistry, oncology, research, and nursing and of course long term survivors themselves. Both Hill and Brader agree that the survivors are often the most adept at answering questions correctly and sensitively. “Survivors direct experience many times trumps clinical experience of professionals, though we would never suggest that they have the same level of knowledge. But living on the receiving end of the treatment process definitely provides you with a much different perspective. We don’t let inaccurate information live on our boards,” says Hill, “and we will correct or eliminate the information/comments that are incorrect or scientifically unsupported.”

It is this kind of monitoring and oversight that earned OCF’s websites, oralcancer.org and oralcancersupport.org, Health on the Net’s HONcode certification. The HONcode is a designation reserved for online publishers of trustworthy and reliable medical and health information who have volunteered to adhere to hundreds of strict guidelines and Health on the Net’s code of ethics. This certification is an oversight process that is ongoing, to ensure the consumer that information presented is trustworthy and scientifically accurate; and that protocols for proper informed interaction are in place. With the understanding that poor information can lead to poor choices, OCF has gone to great lengths to protect its members from misleading information.

Today, the Oral Cancer Foundation is working hard to make patients and their families aware that support and answers are available online, for free, 24 hours a day by visiting the web based forum. In keeping with OCF’s missions to reduce suffering and save lives through prevention, education, research, advocacy, and patient support, the forum has been designed to fulfill the need for reliable medical information and emotional support. With over 10,000 active members, thousands more who visit the site, read the threads of discussion without becoming members or posting themselves, and over a quarter million archived threads of information, the forum has grown into the largest and most well curated databases of oral cancer information and emotional support on the internet. Members now span across the globe and dozens of countries. Even oncology researchers have looked to this online community to develop answers and insights into understanding the patient experience, and improving the ways in which they interact with patients, and anticipate their needs both physical and emotional.

When discussing the relationships he’s made on the forum, Ed Brown, now a 12-year oral cancer survivor says, “Finding each other is the greatest thing that has ever happened to us. When you feel like you’re some kind of freak and struggling alone with your issues, it’s the best feeling to find out there is someone else out there who has dealt with the same thing, someone who knows what it’s like, someone who understands the “work-arounds” for some of the complications of treatments that we all deal with. Thanks to the forum I now know 10,000 survivors who because of our shared experiences are a resource I can turn to.”  Few people can comprehend the pain and hardship of undergoing treatment for a life threatening illness, fewer are aware of the emotional isolation and lonesomeness that accompanies the disease. Only survivors, other patients, and their caregivers live the intimate struggles and battles of will that take place when fighting for your life.

“The support forum became a second family really, not just a bunch of patients or survivors, but a community that I was a part of. We’ve all shared a common experience, endured treatment, survival, complications, and funerals. The camaraderie in the community is the heart and soul of what OCF really is – a group of people helping other people,” says Hill. The individuals who use the support forum have made lifelong friendships and passed along their experiences and knowledge to others.  Brown says, “For every success I’ve had on this journey, likely a thousand people will have known about it.” Sharing in the successes of others and giving back to a community that has embraced you during your difficult times are important reasons why many of the thousands of forum users continue to use the site after they’ve been declared “disease free.”

Hill has called the patient support forum the “heart and soul” of the foundation. Given the foundations many diverse activities; from sponsoring research to advocacy, those that populate the OCF forum, who choose to spend part of their new lives in service to those behind them on the path, he feels they are the palpable core of what OCF is. Few face-to-face support groups can deal with the daily needs of patient ups and downs, as they most often meet once a month, and have less depth of experience to draw from as there are fewer individuals to share their experiences, and fewer survivors attending as they move on from their cancer experience. The OCF forum idea, created well before Google was the major search engine we know today, and before any social media companies like Facebook even existed, has a decade and a half of experience as an Internet based platform to help others… as often as they find a need for it.

Oral cancer is not fought with treatment staff and medicine alone, but in conjunction with reliable medical information to facilitate good decision making, and emotional support and guidance when the questions and weight of the experience seem overwhelming. OCF’s Patient Support Forum is a resource rich with answers, accessible anytime, from nearly anywhere, anonymous, monitored and safe, and free to anyone in need.

For more information about the Oral Cancer Foundation and the Patient Support Forum, please visit oralcancer.org and oralcancersupport.org.

About the Oral Cancer Foundation:
The Oral Cancer Foundation, founded by oral cancer survivor Brian R. Hill, is an IRS registered non-profit 501(c)(3) public service charity that provides information, patient support, sponsorship of research, and advocacy related to oral cancer. Oral cancer is the largest group of those cancers that fall into the head and neck cancer category. Common names for it include such things as mouth cancer, tongue cancer, head and neck cancer, and throat cancer. The Oral Cancer Foundation maintains the web sites: www.oralcancer.org, www.oralcancernews.org, www.donate.oralcancer.org, www.oralcancersupport.org and www.ocfstore.org, which receive millions of hits per month. Supporting the foundation’s goals is a scientific advisory board composed of leading cancer authorities from varied medical and dental specialties, and from prominent educational, treatment, and research institutions in the United States. The foundation also manages the Bruce Paltrow Oral Cancer Fund, a collaboration between the Paltrow family represented by Ms. Blythe Danner (Paltrow), Gwyneth Paltrow, Jake Paltrow and the Oral Cancer Foundation.

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Spreading awareness and saving lives — Oral Cancer Foundation’s Walk for Awareness may be coming to a city near you!

Source: www.prnewswire.com
Author: press release

Oral cancer has historically existed outside the awareness of much of the public, yet in the U.S. it claims one life every hour of every day of the year. This year alone, approximately 45,750 Americans will be diagnosed with oral cancer. This number is on the rise and The Oral Cancer Foundation (OCF) needs help spreading awareness about this devastating disease. OCF is working in communities across the country to bring “Walk for Awareness” events to the public, and with them the opportunity to engage in a conversation that too few people are having.

These events raise awareness of a disease that far too many Americans have never even heard of. Most events also incorporate free to the public oral cancer screenings, providing the opportunity to educate attendees about the early signs and symptoms of oral cancer while also instilling the importance of early detection and need for annual oral cancer screenings. To see if an OCF Walk for Awareness is taking place near you, visit oralcancer.org and click support to view an interactive map of the organization’s upcoming events.

OCF has been raising awareness and providing support in communities for 16 years in cities scattered across the US. Here are a just a few of the remaining Fall 2015 events:

  • The 5th Annual Oral Cancer Foundation Walk/Fun Run for Awareness – Twin Cities, Minnesota, will take place this Sunday, September 27, 2015 at City of Eagan Community Center. For more details, to register and donate please visit, donate.oralcancer.org/event/twincities2015.
  • The 9th Annual Oral Cancer Foundation Walk/Run for Awareness – Boston, Massachusetts, will take place on Sunday, October 4, 2015. This event has been taking place for nearly a decade! Please join OCF this year at the Chestnut Hill Reservoir in Brighton, Massachusetts. For more information about this event, to register or donate please visit, donate.oralcancer.org/event/boston2015.
  • The 2nd Annual Oral Cancer Walk/Run for Awareness – Southern California will take place on Saturday, October 10, 2015 at Mile Square Park in Fountain Valley, CA. Please visit, donate.oralcancer.org/event/southerncalifornia to find out more.

Participating in and supporting an OCF event helps the foundation accomplish many of its important missions. As a national public-service, 501c3 non-profit entity, OCF’s mission is to reduce suffering and save lives through prevention, education, research, advocacy, and patient support activities. In addition to OCF’s community outreach activities, the foundation hosts the websites oralcancer.org and oralcancersupport.org to deliver free and vetted oral cancer health information to the public including the risk factors that lead to oral cancer, signs and symptoms, treatments, current research, complications of treatment, nutrition, related clinical trials, and current oral cancer related news.

Through the small event registration fees and community fundraising, OCF’s national walk events pay for the many missions of the foundation related to this disease. The money funds researchers working on various components of the problem, pays for advocacy work at places as diverse as the National Institutes of Health, National Cancer Institute, The Centers for Disease Control, and even in the political components of our government. By participating in an OCF event, you can help further progress against a disease that takes far too many lives.

About the Oral Cancer Foundation:
The Oral Cancer Foundation is a 501 (c) 3 national public service, non-profit entity designed to reduce suffering and save lives through prevention, education, research, advocacy, and support activities. Visit www.oralcancerfoundation.org to learn more about risk factors, signs and symptoms, treatments, current research and current oral cancer related news, among other important information.

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Cowboy with a statement on smoking

Source: www.vp-mi.com
Author: Adam Robertson
 
55f20e17c6255.imageA cowboy stands against smoking
Above: Cody Kiser holds on as his bronco goes wild during the Sanders County Fair rodeo; Kiser has teamed up with the Oral Cancer Foundation to raise awareness of the dangers of tobacco products through the rodeo.

 

PLAINS – Tobacco use has been a big part of the rodeo for years; one participant of the Sanders County Fair is in the forefront of changing this, though, by promoting a tobacco-less lifestyle through the sport.

Cody Kiser, a cowboy who rode bareback broncos at the Fair, has teamed up with the Oral Cancer Foundation’s ‘Be Smart, Don’t Start’ campaign to help teach kids about the dangers of tobacco products and oral cancer. According to their website, the campaign is part of the foundation’s rodeo outreach and attempting to “become engaged where the problem lives.”

“While other [groups] are focused on getting users to quit, the Oral Cancer Foundation is reaching out to young people to not pick up the habit that they may see one of their rodeo heroes engaging in,” stated information provided by the OFC.

To help with this, Kiser and the foundation have been working to present role models within the rodeo world who do not use tobacco products and actively advocate against their use.

“How do you change that?” Kiser asked, regarding the tobacco-use culture. “I think that is in kids; you have to get to the kids and get their opinions changed.”

The foundation’s main focus has been on reaching out to middle school and high school students, though getting their message to any kid is helpful. They try to inform the kids of the dangers of tobacco products, with a particular emphasis on chewing tobacco, which is heavily linked to developing oral cancer.

“We’re not here to tell anybody how to live their life or anything, if they’re already chewing or smoking,” said Kiser. “Just give information … and hope we reach out to the kids. That’s the main thing.”

During the Sanders County Fair rodeo, Kiser only wore sponsorship logos for the OCF. He also took time to talk to kids at the fair and give out pins, bandanas as well as other items with the foundation’s message on them.

It was noted there are other rodeo riders who do not smoke or chew tobacco, though it is rare. This has been turning around in recent years, though, and there are organizations promoting tobacco-free rodeos, where only people who do not use tobacco products participate. Other organizations, like Project Filter and reACT, are also working to educate kids about tobacco use through the rodeo.

“There are groups who are doing this now,” Kiser said. “It’s not just us … There is some move towards it. It’s in its infancy right now, but there people who are doing stuff.”

He also recalled a number of athletes had used tobacco products and reported regretting it later in life; some hall of famers have said they would do things differently, in regards to tobacco use, if they could go back. The main goal of the OCF and its ‘Be Smart, Don’t Start’ campaign has been to help kids avoid having those regrets.

The foundation hopes to set up public speaking arrangements at schools for Kiser and their other ambassadors in the near future, though for now their outreach is limited to rodeos. Going directly to the schools would help them reach out to kids more and spread their message further.

Tobacco use is strongly linked to oral cancer, which has several severe impacts on the body; everything from losing teeth to serious oral sores or even death. The effects do not stop at a personal level either and can spill over to other people’s lives as well.

According to the OFC, approximately 46,000 people are diagnosed with oral cancer each year. This translates to almost 115-120 people diagnosed each day.

More information on the Oral Cancer Foundation can be found at www.oralcancer.org.

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

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Raising awareness at the rodeo

Source: www.dailyrecordnews.com
Author: Nicole Klauss
 
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A rodeo barrel racer from California is helping spread the word in Ellensburg that people shouldn’t start using tobacco.

Carly Twisselman competed at the Ellensburg Rodeo slack Thursday night. She also helped share the message of the Oral Cancer Foundation, which is “Be smart. Don’t start.”

While attending and competing at rodeo events, Twisselman reaches out to youth to encourage them not to pick up the habit they may see their rodeo heroes have.

“The rodeo is known for having a lot of chewing tobacco. … The rodeo is such a small community and the heroes in it, the children look up to,” Twisselman said. “When they see their hero, growing up they think ‘I want to be like them.’”

Campaign

The Oral Cancer Foundation teamed up with Twisselman and bareback bronc rider Cody Kiser to spread the word in the rodeo circuit. The goal of the campaign is to spread awareness of oral cancer and the dangers of starting tobacco use. Twisselman often spends time talking to children and hands out buttons and bandannas to spread the message.

Smokeless/spit tobacco is one of the historic causes of deadly oral cancers, and is more addictive than other forms of tobacco use, according to a news release from the Oral Cancer Foundation.

According to the Oral Cancer Foundation’s website (www.oralcancer ocw.upc.edu.org), mouth cancers are newly diagnosed in about 115 people each day in the U.S., and worldwide new mouth cancer cases exceed 450,000 annually. When found at early stages of development, people with oral cancers have an 80 to 90 percent survival rate.

Twisselman has never used tobacco, though some in her family have. Her two brothers both used chewing tobacco, but quit on their own before Twisselman got involved with the Oral Cancer Foundation campaign.

Personal

Twisselman grew up on a cattle ranch in central California and comes from seven generations of ranching.

“I’ve been riding horses and competing in rodeos since I could walk,” she said. “I won the youngest rider award from my fair when I was 2. It’s pretty much been in my blood and my lifestyle forever, and it’s something I’ve always been passionate about.”

She went to school in Los Angeles, Calif., to study communications and pursue an acting career. Today she is the host of a show on the Ride TV channel. She balances that with rodeo activities.

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

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Rodeo Competitor Speaks to Youth to Spread Anti-Tobacco Message

 

Source: www.prnewswire.com
Author: Oral Cancer Foundation
 
Unknown-1Cody Kiser prepares for competition while sporting the Oral Cancer Foundation’s message – Be Smart. Don’t Start.

 

NEWPORT BEACH, Calif., Aug. 14, 2015 /PRNewswire-USNewswire/ — The traditional image of the American cowboy is one of strength, rugged determination and courage. In the world of professional rodeo competition, that image is no different. Cowboys—and increasingly so cowgirls—are held in esteem and looked at as heroes by young and old alike. The power of the cowboy as a compelling figure has not gone unnoticed by the tobacco industry, whose marketing campaigns have sought to tie the ideals of the cowboy with the use of their products. The western/rodeo environment in the US has had a long-term relationship with tobacco, and until 2009 The Professional Rodeo Cowboys Association (PRCA) and the rodeos that they sanctioned had a lengthy history of tobacco money funding the sport. While that has ended at PRCA events, tobacco use and smokeless/spit tobaccos are still popular within the sport.

The Oral Cancer Foundation (OCF) believes that in order to solve problems you must engage the problem at the source. As a small and growing non-profit, OCF is not afforded the luxury of relying on conventional methods of outreach utilized by larger, more established charities. To enact meaningful change and bring awareness to the public, OCF must employ ingenuity and creativity to address the problems at hand. Within the world of professional rodeo, that problem remains to be the glorification and pervasive use of tobacco products amongst athletes and fans. The Oral Cancer Foundation is the first non-profit charity to ever sponsor a rodeo competitor, and in doing so is able to introduce a new type of role model into the rodeo world.

In 2014 OCF partnered with Cody Kiser, a young, personable, up and coming bareback bronc rider to promote the foundation’s anti-tobacco campaign. As a spokesperson for the foundation Cody hopes to serve as a positive role model for children and teens that look up to cowboys as their heroes in the rodeo world. Research shows that as many as 15% of high school boys use smokeless tobacco in the United States. With the nicotine content in a can of dip equaling approximately that of 80 cigarettes, this addiction can be one of the hardest to break, which is why The Oral Cancer Foundation hopes to educate parents and youth about the dangers before they even get started.

On June 11th Cody attended the Montana High School Rodeo Association’s (MHSRA), reACT Tobacco Free Rodeo Finals, in Kalispell, MT, speaking to youth and their parents. ReACT Tobacco Free Rodeo is a campaign sponsored by the Montana Tobacco Use Prevention Program empowering teens to take a stand against tobacco and honoring rodeo athletes who pledge to live tobacco free. This year reACT awarded five MHSRA Seniors with $5,000 scholarships towards their college educations, and 14 high-scoring student athletes received breast collars in recognition of their achievements and commitments to living tobacco free.

As motivational speaker, Cody discussed how Rodeo culture has been inundated by tobacco companies, and how this is a new generation that can make a difference by taking a stand against tobacco companies that use the country way of life to market a deadly product. The forty-five minute presentation focused on how living a tobacco-free lifestyle has assisted Cody in making good choices and accomplishing his dreams. Cody stressed to the teens in attendance that they each had a choice, and in choosing to live tobacco free they also had the power to fulfill their own dreams and enact meaningful change.

While adults certainly have the right to make any lifestyle choice they desire, they inadvertently expose impressionable young people to what are sometimes harmful habits through poor examples like the use of tobacco products. This is particularly harmful as kids look up to athletes, not just in rodeo, but major league baseball and elsewhere, as heroes that they aspire to be like. Unfortunately, no hero is ever perfect. OCF uses its Rodeo Campaign to put alternative role models out in the world of rodeo cowboy athletes, with the intention of reaching young people before they make addictive choices that will harm them later in life. The foundation’s message is simple and straightforward: Be Smart. Don’t Start.

About the Oral Cancer Foundation

The Oral Cancer Foundation, founded by oral cancer survivor Brian R. Hill, is an IRS registered non-profit 501(c)(3) public service charity that provides information, patient support, sponsorship of research, and advocacy related to this disease. Oral cancer is the largest group of those cancers that fall into the head and neck cancer category. Common names for it include such things as mouth cancer, tongue cancer, head and neck cancer, and throat cancer. OCF maintains a web site at http://www.oralcancer.org, which receives millions of hits per month. Supporting the foundation’s goals is a scientific advisory board composed of leading cancer authorities from varied medical and dental specialties, and from prominent educational, treatment, and research institutions in the United States.

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