Founder and Executive Director
I am a stage 4 oral cancer survivor, and had bilateral cervical metastasis of the disease at the time it was discovered. After trying but successful treatments at MD Anderson Cancer Center in Houston, I became a student of the disease. Once it became clear to me that the death rate and the high morbidity of the disease could be reduced through a national effort in awareness and early discovery screening programs, combined with motivating professionals to provide opportunistic exams, I chose to leave the private sector and work towards those ends. While ultimately there will be scientific solutions to things, they are years away. There are tangible, palpable opportunities to reduce the death rate today while those long term solutions are being explored and created. There is also a much needed opportunity to help those currently fighting their own battles with this disease, supporting them with good, current, access to key information that allows them to make the best decisions possible as they travel their path to wellness. OCF started as a seed of an idea in 1999, and my wife Ingrid and I were the original founders and financially capitalized the beginnings of the foundation. Through the support of key oral cancer experts drawn from treatment, education, research, government, and professional medical and dental societies, and thousands of donors and volunteers, that early idea has been nurtured and grown into a powerful national force for proactive change and improved lives.
Besides the responsibilities that you would expect of the head of an organization like ours, I am also a frequent lecturer at universities and professional medical and dental society meetings and cancer conferences. I have often been the face of the foundation and the disease on TV interviews, an advocate for the cause at various government entities such as the CDC, and have been interviewed on the subject of oral cancer by print media such as The Wall St. Journal, The Boston Globe, USA Today, and many others. I sit on the oral cancer task forces of many other organizations such as the American Academy of Oral Medicine, The American College of Prosthodontics, The American Association of Oral and Maxillofacial Surgery, The International Academy of Oral Oncology, and The Centers for Disease Control Oral Cancer Task Force. Simultaneous with my responsibilities at OCF I am the administrator of OCF's long time partner, The Bruce Paltrow Oral Cancer Fund, overseen by Actress Blythe Danner and her children Gwyneth and Jake Paltrow.
Most people that know me understand that the many hours I put into OCF are not a job to me, but rather a passion. While I am often incorrectly credited with much of the positive change that has happened, I am very cognizant that there is nothing that I have done alone, nor without standing on the shoulders of others who facilitate my, and the foundation's success.
Director of Internet Technologies
Since 2001 I have worked with the foundation to build the Internet site that you see here today. It has grown from a simple information dissemination concept into a highly interactive outreach to the public - raising awareness and providing the world's largest oral cancer support group - a place to share ideas, help in emotional coping when dealing with the disease, and to those newly diagnosed, navigate the path through the treatment process.
While I originally came to the foundation as an HTML "code warrior," today I am much more emotionally involved with the mission of the foundation. It is very rewarding to be an integral part of changing the oral cancer issue through the use of technological platforms, and being able to actually measure the impact of the foundation's reach that these vehicles bring. I strive to constantly see that the mechanisms by which the foundation reaches both the public and the population of patients and family members it serves, are the most current and sophisticated available.
OCF Note: When Chester is not building OCF technical capabilities, he tours the world from Dubai to Sydney with long time rocker Tommy Lee, and, DJ's for other high profile people and organizations like skateboard legend Tony Hawk.
Director of Administration
Treatment Facilities Coordinator
I started at OCF as a part time administrative assistant, to help with the operations aspects of running OCF, not knowing much about oral cancer. I don’t have a direct connection to oral cancer, but I have read the many postings in the forum and have been inspired and motivated by the inner strengths of both patients and families.
As the Treatment Facilities Liaison, my goal is to develop relationships with key staff members at cancer treatment centers nationwide, to help promote the OCF forum in those facilities. The foundation hopes that more people who are in their battle with the disease, and dealing with the complications of treatment, can learn and obtain emotional support from the wisdom of previous patients and caregivers in the OCF support forum. The family of patients, survivors, caregivers, and medical and dental professionals in the forum is growing daily, and it is now the largest head and neck /oral cancer support group in the world. We want treatment facilities to be aware of this opportunity for their patient populations.
In my administrative position I oversee the "business" of OCF. Wearing a lot of hats, I am responsible for overseeing areas as diverse as our outreach programs, finance, and grant proposals, to supervision of staff involved in order fulfillment, and providing the metrics of the foundation from the impact of our social networking efforts to our many events around the country.
I am proud to be a part of an organization that is striving daily to make a difference in the world, and love working for and with, patients and survivors, treating doctors and researchers, and the dental community that have all chosen to take up the cause with the foundation.
David Morgan, PhD
Director of Scientific Affairs
As Director of Scientific Affairs for the Oral Cancer Foundation, my role is to help the organization develop rational positions on the issues associated with the management of oral cancer and the related risk factors that are consistent with the known scientific facts. In some cases, this will lead to the public dissemination of corresponding position papers. For example, issues such as tobacco harm reduction, the use of regular intra and extra oral head and neck exams for oral cancer screening, the role of adjunctive oral examination devices, are all topics about which there are widely differing opinions. My job is to establish positions that facilitate the OCF’s ability to play a key role in promoting rational discussion on these and other topics, based on the existing scientific evidence. In addition, I act as liaison between the foundation and the clinical / scientific community in the ongoing process of understanding oral cancer and translating this understanding into robust strategies that can be implemented by the dental and/or medical communities. The objective is, of course, to help reduce the incidence, morbidity and mortality associated with this deadly disease.
I have an MSc and PhD in physics and started out my career in academia as a research fellow at the University of Cambridge in the UK, and the University of British Columbia in Canada. Although I found this experience rewarding and satisfying, my interests started to shift toward the life sciences and I subsequently became a research associate at the BC Cancer Research Centre in Vancouver. This has led to a 12 year association with research and product development of medical devices the majority of which has been concerned with the use of optical techniques, in particular tissue autofluorescence, as a tool to aid in the detection and management of human disease. I was involved not only in product development and clinical/regulatory affairs in the development of such devices, but also as an educator about the disease itself. I have come to appreciate in a very real way, not only the tragic human component of the suffering associated with oral cancer, but the challenges associated with effecting change in the way we deal with it within our society. This has given me a passion to play a larger role as an agent for change. I feel I can leverage my experience to help the Oral Cancer Foundation continue to be a central player in the fight against oral cancer.
Events and Volunteers CoordinatorAs the Event Coordinator for the Oral Cancer Foundation one of my main roles is to help others plan and execute fund raising, screening, and awareness events around the country. Our goal is to expose communities to the world of oral cancer, promote early detection and awareness through these events. Volunteers are a major and valuable resource for doing these events, so I am also always looking for dedicated people who want to make a difference in the world and help put an end to this terrible disease. The foundation organizes free screenings in areas of the country where disparities in health care exist, and where known risk factors are common. The Bruce Paltrow Oral Cancer Fund, is OCF's core partner in making many of these events possible.
I became involved with the Oral Cancer Foundation following the loss of my oldest brother to tongue cancer. This was a disease I had never heard of before, but after witnessing the devastating effects this had on my brother and other oral cancer patients, I decided to get involved. Through my annual memorial walk for my brother, (The David Nasto Walk) I am now raising awareness and hopefully saving some lives. OCF was the only organization I found which was totally dedicated to awareness, research and early detection programs, and I am proud to now be a part of it, and a proactive participant in changing the course of this disease in the world.
Director of Strategic Partnerships
As Director of Strategic Partnerships for the Oral Cancer Foundation, my responsibilities involve identifying and reaching out to businesses and organizations to develop mutually beneficial relationships that help raise awareness of Oral Cancer, and improve early discovery and diagnosis of the disease. My goal is to develop and maintain synergistic relationships with a wide range of entities, many far removed from the medical and dental sectors where we have found our core support to date. While some of these relationships manifest themselves as financial support from organizations with a shared value system, others provide corporate entities with useful exposure that only a relationship with a non-profit like OCF could provide.
In January 2008 I was diagnosed with stage 4 squamous cell carcinoma oral cancer. The treatment and surgery that saved my life were not without consequence, as I was left severely disfigured and my speech significantly affected. I am now resolved to make a difference in the oral cancer paradigm, and help others avoid a similar experience. I found the Oral Cancer Foundation’s website in January of 2009 and have spent the last year educating myself and sharing that information with other cancer patients as well as reaching out to those in my community affected by cancer. When combined with my work skills prior to cancer, I believe that I can augment the effectiveness of the foundation's efforts, as I connect them to an ever-increasing group of corporate entities as their partner.
Finding an opportunity to apply my skills at OCF, even with some of the physical compromises that I live with, gives me the opportunity to be engaged in a meaningful work life, as well as fulfilling my desires to raise public awareness, while educating and providing comfort and support to those struggling with this disease.
Senior Patient Advocate
As a patient advocate for OCF, my primary responsibilities are to work on issues that affect all oral cancer patients. On a large scale this involves being involved in the national dialog with strategic partners of the foundation, media, and government entities to further the foundation's mission of seeing that oral cancer is something that the public is aware of, and that early discovery of the disease at curable stages is taking place. In 2009 this involved testifying at the Centers for Disease Control related to HPV vaccination programs that have the potential to help future generations avoid developing the disease, testifying before the Florida House of Representatives on related HPV legislation, as well as acting as a spokesperson for our cause in radio, TV, and print media interviews as both a survivor and OCF patient advocate. On a smaller scale, I am involved daily communicating directly with patients and their family members through the foundation's web based patient to survivor message boards, which are the world's largest oral cancer support forums.
As a survivor of this disease, and of the difficult treatment process associated with it, I am passionate about not only helping others just beginning their treatment path, but seeing people avoid it altogether. As a never smoker who developed oral cancer through an HPV related etiology and not the more common tobacco cause, I have a particular interest in seeing that more people are aware that this very ubiquitous virus in our country is something that needs to be on their radar.
Laureen Brady, RDH
Liaison to the Northeast Dental Hygiene Community
As the liaison to the oral hygiene community, my main focus is joining oral health professionals, particularly from the RDH world, with the Oral Cancer Foundation. My goal is to create an “oral cancer task force” within the dental hygiene associations. I believe a key to increasing awareness of oral cancer begins with an every six-month recall appointment. As the first line of defense, dental health professionals have a unique opportunity of educating their patients on the early signs and symptoms and risk factors associated with this disease, and being involved in the early discovery process of tissue which appears abnormal. Only through early detection will we as a community begin to see a decline in the incidence rate of oral cancer.
I have been a dental hygienist for seven years and have worked in the dental field for a total of twenty. Although oral cancer has always been a passion of mine, it was after my mother’s good friend was diagnosed with oral cancer that I became dedicated to finding a way to make a bigger difference. As a hygienist, I realized that awareness and early detection are integral to prevention, and the best long term outcomes in people that are developing disease states. By creating and organizing “Walk the Rock,” an annual walk and screening event to raise oral cancer awareness in Plymouth, MA and benefit the Oral Cancer Foundation, I have had the ability to not only raise awareness in hundreds of people at an annual event, but to rally the local dental community to help fight this disease. I believe that my personal experience can be spread to other communities and individuals to make this a national effort, with these kinds of awareness events in every state through channeling the existing passion of the dental hygiene community.
During my life, I have often wondered how I could make a difference in the lives of those less fortunate, and I have come to realize that although I may not be able to help everyone, I can take hold of the opportunities placed within my path to do so. As part of the Oral Cancer Foundation, I have found a vehicle to make that dream a reality. You must be the change you wish to see in the world.
Manager, OCF News Site
I am in charge of seeing that those who visit the OCF web site, and who subscribe to the Oral Cancer News Feed (RSS) from OCF are getting the most up to date articles from around the world on this disease. We survey hundreds of publications each day to seek out the most current and useful information from new peer reviewed scientific papers, to human interest stories on oral cancer for our subscribers and web visitors. These stories are vetted through OCF to ensure that they provide an accurate representation and the most current thinking on the subject, prior to going live on our news feeds.
In January 2004, I was diagnosed with oral squamous cell carcinoma.
Around this time, I discovered the Oral Cancer Foundation, joined their patient/survivor forum, and posted my situation, asking for advice. Within hours, I was told in no uncertain terms, to get in my car, drive to a big city with a comprehensive cancer center and get a second opinion. The foundation staff wrote me and advised me to do research on occult metastasis and that, in their experience, single modality treatment was a risky choice in my situation. Both were very timely and important pieces of advice.
I drove to Boston and consulted with head of the surgical oncology unit at the Massachusetts Eye and Ear Infirmary. My path reports and slides were sent to the pathology department at Mass. General Hospital for a second opinion. That opinion was that my margins were not clean and that I needed more treatment. Within 5-6 weeks, I began radiation treatment at Mass General and had 33 treatments spread out over 61/2 weeks for a total of 66 grays (Gy) of radiation. That treatment ended in May 2004 and I have been cancer free since that time. I am very grateful for the high quality of advice and support I received from the folks on the OCF forum. I truly believe that I might not be around had I not followed it. Working in my capacity at OCF I now have a chance to give back and provide the same kind of timely and current, trusted information that I hope will help others.
Nicki Raines, RDH, MS
Southeast Liaison for the Dental Hygiene Community
I am the OCF Southeast US Liaison to the dental hygiene community. I started working with the foundation after coordinating and getting the local dental hygiene association involved in two oral cancer walks in Nashville, Tennessee known as “Boot Scootin for Oral Cancer Awareness.” This was the first OCF awareness walk organized by a group of dental hygienists. We banded together with the intent to make a difference within in both our own professional community, and the community we live in.
My primary responsibilities for the foundation are helping identify & reaching out to other key dental hygienists and hygiene groups to create synergistic alliances between them and the Oral Cancer Foundation. It is my intent to increase awareness of oral cancer within my own profession as well as the general public. Dental hygienists are often on the frontline of detecting early stage pre malignant abnormalities, and educating patients each day about oral cancer. Many professionals believe that oral cancer is very rare, yet every hour of each day someone dies of oral cancer. This perception must be changed.
My passion for making a difference lies within the context of working in honor of my father who is now a 5 year, stage III colon cancer survivor. My work with the Oral Cancer Foundation allows me to use my numerous years experience as a dental health care provider to make a difference in an area that I truly have passion for….even if it is just one professional at a time.
I have been a clinical dental hygienist for over 25 years, and currently still work 3 days a week in the clinical environment. I have a graduate degree in Counseling Psychology which helps me aide others to work through interpersonal, communication & teamwork issues.
I am honored to be a part of OCF. I pledge to help spread the foundation's mission of prevention, education, research and advocacy, with a goal of reducing incidence and death from this disease.
Senior Patient Advocate- Ambassador at Large
Christine Brader is a single mother whose life was going great until 2007 when she was first diagnosed with oral cancer. She had a great job, a beautiful house and a happy family life raising her children. All that changed when she got sick. Alone, she faced a long hard battle that seemed to be never-ending.
She was diagnosed 3 times with oral cancer in 3 consecutive years. The third time she was diagnosed with oral cancer was 2009, she was Stage IV and needed a complicated surgery to remove her jaw. After several complcations she became disfigured. The recovery took her over a year. Her life after oral cancer is much different. One thing that has not changed is Christine's compassion for others, upbeat attitude, and perserverance. Even if the world sees Christine as being handicapped, she never lets that get her down. She has turned a potentially negative life altering experience into a positive one full of helping others. She realizes all too well how truly fortunate she is to still be alive so she makes the most of every day.
Now, Christine spends her time volunteering on The Oral Cancer Foundation's public forum. She is a Senior Patient Advocate and a board administrator. She welcomes new members, makes them feel at ease and helps them in their battles against oral cancer. She tries to help others to avoid the pitfalls that she went thru while battling oral cancer. Among her other duties with OCF, she also is a speaker for some of the awareness walks. At the walks, she meets other oral cancer patients and dental professionals and provides up to date info about oral cancer. Christine tries to spread oral cancer awareness in her community by speaking with local dental professionals about the inportance of early detection and oral cancer screenings.
Christine has worked with TRUTH.com and the CDC on nationwide anti-smoking campaigns. She also is a volunteer driver with the American Cancer Society driving cancer patients to their appontments.
The Volunteers that make accomplishment of our mission possible
There are many other "key" individuals that make OCF the effective, award-winning organization that it is. Volunteers, too numerous to mention individually, help OCF spread the important message of awareness and early detection, help raise money to fund the foundation's operations and initiatives through their direct donations and making our many annual events around the country possible. Survivor volunteers man the foundation's patient support forums, offering experienced based insights or just emotional support to those just beginning their battle. All of the volunteers through their dedication, and desire to live part of their lives in service to others, are the heart and soul of OCF. When partnered with our Science Advisory Board that ensures the foundation's direction is based on well thought through ideas, and the many individuals that contribute to the foundation's fulfilment of its missions from the worlds or research, education, government, education and treatment, these "many" make the OCF successes possible. We are successful because our mission and the ideas that move it forward, are founded on a broad base of individuals from many disciplines and avenues of thought. We are not some giant entity, caught up in spending our money on perpetuating the mass of our organization. We are a composite of many caring people, mostly uncompensated, drawn together to fight a common enemy, with a genuine desire to better the world.
OCF - Information, Support, Advocacy, Research, and Hope