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.
I sit on two National Institutes of Health (NIH) oversight committees; one at the National Cancer Institute, which oversees clinical trials in immunotherapies in head and neck cancers, the other at the NIDCR reviewing trials looking at long-term consequences of treatment in head and neck cancers.
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 (Paltrow) 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
I started at OCF as an 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 the disease, but I have read the many postings in the forum, interact with patients and family members daily, and have been inspired and motivated by the inner strengths of both patients and their families.
Now having worked my way up to the Director of Operations position, I answer to the foundation's Director and the Board. There is little in the workings of OCF that I do not play a part in. My responsibilities are as diverse as overseeing the staff of the foundation and their individuals jobs, from community outreach programs, to our grant writing and financial concerns. At a small entity like OCF, I certainly wear lots of hats and my days are diverse. In the end, my chief concern is that the foundation operates efficiently - and that given the resources that we have, both human and financial, that they are used to optimum benefit, with metrics at the end that our donors and sponsors can be proud of. Working with staff inside the organization, our challenge is to come up with solutions that are cost effective to create meaningful change in the oral cancer paradigm. This often means finding new "out of the box " and obtuse ways to fulfill the needs of both the treating community and the patient community. Because of the directive to be innovative in solution finding, the job environment is always based on creative thinking, keeping it interesting, and is ever changing. It is a privilege to work in an environment where helping others is our primary mission.
Director of Special Projects
At OCF, my main responsibilities are to design and implement a wide range of programs focused on developing strategic partners and volunteer leaders to join with the foundation on our oral cancer awareness related endeavors.As a graduate of the University of California, Irvine with a major in Public Health, I am grateful to be apart of an organization that works toward protecting the oral cancer community’s quality of life issues today and in the future. I am passionate about the foundation’s ability to problem solve and accomplish a wide range of tasks while working on a limited budget.
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.
Director of Events
As the Director of Events 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.
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.
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.
Director Patient Support Services
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 complications 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 through 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 importance 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 appointments.
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.