Key Staff

I am a stage 4b 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, and the treatments to control it, 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. Initially that effort was as a speaker and advocate, but I rapidly realized that an entity that could bring together different components of the needed solutions, and involve more people to accomplish those goals was necessary. The result was the formation of The Oral Cancer Foundation (OCF), and IRS registered 501c3 non-profit charity. While ultimately there will be scientific solutions and treatment advances to many things, and OCF will financially contribute towards their discovery and availability, 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 vetted, accurate, current, 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 saveexperts 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, the NCI, and the NIDCR, 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 also work 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 and outcomes of treatment in head and neck cancers. OCF and I have received numerous awards for our accomplishments. Our strength is developing strategic relationships with partners allied against this disease. Some of the other organizations I am part of on committees and task forces are: College of American Pathologists, HPV / H&N SCC Commission, and their HPV testing guidelines group • American Society of Clinical Oncology, Member • American Academy of Oral Medicine, Member • Centers for Disease Control (CDC) Oral Cancer Work Group • International Academy of Oral Oncology, Member • The Armstrong Foundation Grant Review Committee (past member) • American College of Prosthodontics, Oral Cancer Task Force Member • International Consortium on Head and Neck Cancer Awareness, Founding Member • International Association for Dental Research, Member • American Academy of Oral & Maxillofacial Surgery, Oral Cancer Task Force Member • American Public Health Association. Member • HPV Action Group (UK), Founding Member.

Simultaneous with my responsibilities at OCF I am the administrator of OCF’s longtime 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.

Since 2001 I have worked with the foundation to build the Internet site 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 – with a place to share ideas, help in emotional coping when dealing with the disease, and those newly diagnosed, navigate the path through the treatment process. If it involves anything web-based, from the OCF store to the donations platform to the events’ software, I am tasked with making those things happen efficiently and efficiently.

While I initially came to the foundation as an HTML “code warrior,” today, I am much more emotionally involved with the foundation’s mission. It is gratifying to be an integral part of changing the oral cancer issue by using technological platforms and measuring the impact of the foundation’s reach that these vehicles bring. I strive to constantly see that the mechanisms by which the foundation reaches the public, the population of patients, and the family members it serves are the most current and sophisticated.

My background is in big pharma as a manager with giants like Astra Zeneca and smaller dental implant companies. They were pioneers in making implants the standard restorative tool they are today. My husband, OCF’s Executive Director, and I have been together for over three decades. We started medical/dental businesses from scratch, building them into national entities before selling them. Brian was the person with the vision; I was the person that kept it all financially in line and made sure that the daily nuts and bolts of operating an FDA-regulated, class three medical device company was staying in compliance. Every aspect of it, from working with customers at the many dental and medical trade shows we attended to ensuring the financial and employee components of the company were operating correctly, was my world. In all of our ventures, from implant designing and manufacturing company owners with customers around the world, to now the operations person at OCF; daily details, interfacing with vendors and CPA firms, and staying in compliance with the IRS 501c3 rules that control all US charities, fall into my realm of responsibility. As the Director of Operations, I am also tasked with seeing the nuts and bolts of running the most prominent head and neck/oral cancer national charities in the US happen smoothly. I am responsible for bridging the gap between OCF’s human side of our efforts and the real business of running a national entity. I was my husband’s caregiver during his stage 4 battle with this cancer. While not the patient, caregivers know the physical and emotional toll this disease brings on people’s lives. So my understanding of patients’ needs, empathy for their situation, and a passionate desire to see their impact on the world reduced are all intertwined in my DNA. I manage many of the internal affairs of OCF’s initiatives and programs, as well as the many vendors and relationships with allied professional and charitable organizations. In accomplishing these tasks, the foundation’s many efforts can effectively reach the ever-growing community of supporters and collaborators to promote public education related to oral cancers and their early detection, fund research collaborators at major institutions, conduct advocacy work, support patients and survivors, and raise the public funding necessary to expand the many initiatives of the foundation. One of the main and most enjoyable parts of my job is working directly with the students and other volunteers that help OCF as on-site coordinators at our many walk/run events around the country. Did I say I stay swamped?

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 managing oral cancer and the related risk factors that are consistent with the known scientific facts. Sometimes, 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, and 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 vital role in promoting rational discussion on these and other topics based on the existing scientific evidence. In addition, I act as a 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 to help reduce the incidence, morbidity, and mortality associated with this deadly disease.

I have an MSc and Ph.D. in physics and started my academic career 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 the human disease. I was involved in product development and clinical/regulatory affairs in developing such devices and as an educator about the disease. I have come to appreciate authentically the tragic human component of the suffering associated with oral cancer and the challenges associated with effecting change in how we deal with it within our society. This has given me a passion for a more significant 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.