Board of Directors

David J. Stewart, M.D. - Chair

Dr. Stewart returned to Ottawa from the University of Texas MD Anderson Cancer Center (Houston, TX) in 2011 to assume the position of Head of the Division of Medical Oncology at The Ottawa Hospital and the University of Ottawa. He received his MD degree from Queen’s University, Kingston, followed by training in Internal Medicine at McGill University and in medical oncology in the Department of Developmental Therapeutics at the UT MD Anderson Cancer Center. He first moved from MD Anderson to the University of Ottawa and the Cancer Care Ontario Ottawa Regional Cancer Center in 1980, and served as Chief of Medical Oncology at the Ottawa Civic Hospital from 1989 to 1999. He returned to the Department of Thoracic/Head and Neck Medical Oncology at MD Anderson Cancer Center from 2003 to 2011 where he served as Chief of the Section of Experimental Therapeutics (2003-2005), Chair Ad Interim (2005), Deputy Chair (2006-2009), and Director of Translational Research (2009-2011). He was also the Principle Investigator of MD Anderson’ phase II N01 contract with the National Cancer Institute, and was the clinical leader of a number of other federally-funded translational research project. He has more than 300 peer-reviewed publications, with a research focus on phase I and II trials of new anticancer agents, translational research and resistance to anticancer agents. He also has a major interest in and concern for issues impeding cancer clinical research, with publications that have included (among others) Cancer: the road to Amiens (Journal of Clinical Oncology 27(3):328-33, 1/2009), Equipoise lost: ethics, costs and the regulation of cancer clinical research (Journal of Clinical Oncology 28(17):2925-35, 2010), Fool’s gold, lost treasures and the randomized clinical trial (BMC Cancer 2013 Apr;13(1):193),and Redefining cancer: a new paradigm for better and faster treatment innovation. (J Popul Ther Clin Pharmacol 2014 Feb 23; 21(1):e56-e65). His experience in both the American and Canadian health care systems has provided him a unique perspective on how common regulatory factors seriously impair access to effective new therapies and drive inordinately high clinical research costs in both countries.

John-Peter Bradford, FCMC, Ph.D. - CEO

John-Peter is a cancer survivor, caregiver and is passionate about his work on issues of cancer research, healthcare policy and delivery. He is a Co-Chair of the Advocacy Committee of Lung Cancer Canada, and is a member of the Research Advisory Group of the Canadian Partnership Against Cancer and the Cancer Care Advisory Committee of the Ottawa Regional Cancer Foundation. His book, Journeys in Cancerland, with Lisa Newman, was published in 2012. It was based on his experiences and observations of the healthcare system as a cancer patient. He has also published in magazines, newspapers, literary periodicals and peer-reviewed scientific journals on a range of topics including regulatory and healthcare reform.

 

In the public sector, John-Peter has been principal consultant in restructuring the infrastructures of the House of Commons, the Supreme Court of Canada, the Medical Research Council of Canada, The Immigration and Refugee Review Board of Canada, HRDC, the Canadian Commercial Corporation, to name a few. He coordinated the development of the Inuit land claim that was presented to the Trudeau government in 1976, and was the basis for the eventual formation of Nunavut, Canada’s newest territory. In the private sector, he has served as CEO and board member for publicly listed and private companies, as well as strategic advisor to senior management, organizational doctor and deal maker. He has helped raise hundreds of millions of dollars.

 

John-Peter is a Fellow of the Institute of Certified Management Consultants of Ontario (FCMC). He holds a B.A. (Psychology) from Fairfield University in Connecticut and an M.A. (Experimental Psychology) from the University of Toronto, where he also successfully completed all requirements but dissertation for a doctorate, specializing in psychopharmacology with a minor in neuroanatomy. During his tenure at the University of Toronto, he taught and held Province of Ontario and NRC Fellowships, and was nominated for a Woodrow Wilson Dissertation Fellowship. He holds a Ph.D. in Psychology and Community Services.

Colin Cooke - Secretary/Treasurer

Colin is an experienced relationship manager and not-for-profit business leader with expertise in financial services, board-level management and operational leadership. For example, he has served as Interim President of the North-South Institute and Chair of the Ottawa Chamber Music Society. In his work with not-for-profit organizations, Colin draws on his extensive background in private banking and wealth management in the National Capital region. He is currently developing several NFP board governance initiatives and working closely with John-Peter to achieve the goals and objectives of LSTN. His education includes a B.A. in Political Science from Carleton University, a Certificate in Business Administration from Ottawa University and a number of professional certifications in financial services.

Linda Eagen - Board Member

Linda is a dynamic, results oriented, community leader who has a strong track record of performance in the not-for-profit sector. Linda began her career as a student of psychology and emergency medical care.  Her passion for helping others then led her to the fundraising profession. Over 20 years she has raised more than $150 million for social, arts, health and educational organizations. In 2002 she obtained an MBA from the University of Ottawa.

 

For the last ten years, Linda has been the President and CEO of the Ottawa Regional Cancer Foundation. She and her team have raised $50 million for cancer care and research in Eastern Ontario. In 2011, the Cancer Foundation opened the doors to Canada’s first cancer Survivorship Centre. The Centre’s team of professional Cancer Coaches now provides health and social care to people with cancer, their families and caregivers.  This innovative community service complements the work of medical professionals helping people take an active part in their health and wellness.

 

Linda and her team have been recognized for their outstanding leadership and community service receiving prestigious awards from the University of Ottawa, the Chamber of Commerce, le Regroupement des Gens d’Affaires and the Association of Fundraising Professionals.

Robert A. Phillips, Ph.D. - Board Member

Dr. Phillips has been a long-time advocate for effective and innovative cancer research. He was a founder, President and CEO of the Ontario Cancer Research Network (OCRN), a province-wide initiative to accelerate the development of new cancer therapies. As OCRN’s director, he created funding programs that allowed clinical trials sites to recruit new staff and oversaw the creation of a training program for clinical trials professionals, a website to help patients locate clinical trials and a research ethics board that reduces workload at the institutional level. All of these programs have flourished, and 13 per cent of Ontario cancer patients now enroll in clinical trials – up from just 5 per cent before OCRN was established.

 

He was the Deputy Director (COO) of the Ontario Institute for Cancer Research (OICR) after it merged with OCRN, the CEO of the Integrated Biobank of Luxembourg, and the Executive Director of the National Cancer Institute. He has also served on a number of boards including the Canadian cancer Society. To honour his contributions to cancer research, the Ontario Institute for Cancer Research (OICR) created the Robert A. Phillips Annual Lecture, the fifth of which was given in 2014. Dr. Phillips has also received the R.M. Taylor Medal and Award from the Canadian Cancer Society and the National Institute of Canada.

Core Team

John-Peter Bradford, FCMC, Ph.D. – CEO

Please see Board of Directors.

Kristin Bright, Ph.D. - Lead Investigator

Dr. Bright is a medical anthropologist at the University of Toronto and lead investigator on LSTN’s Roundtable Project, a mixed method study of research protocols and approval processes in therapeutics for lethal disease. Her recent ethnographic research has focused on the organization and ethics of cancer treatment in Canada, India, and the US, including transformations in personalized medicine and digital health. Dr. Bright completed her PhD in sociocultural anthropology at the University of California Santa Cruz in 1998 and postdoctoral training in public health at UC Berkeley in 2005. Previously she taught anthropology at Stanford University and New York University School of Medicine where she co-led international translational research in advanced breast cancer and helped develop programs in patient navigation and ethnographic training for medical students. Her experiences in Canada and internationally have provided her with a unique perspective on the impact of system factors including data sharing, institutional history, and regulatory cultures on how new therapeutics are made available, to whom, and when.

Colin Cooke - Senior Advisor

Please see Board of Directors.

Greg Coutts – Webmaster and IT Manager

Greg holds a B.Sc. from Queen’s University in Engineering Physics, and consults in IT related matters, including database creation and management, website management and crowd sourcing. He will handle all of these tasks for the project, and manage any consultants related to them that the project engages. He is passionate about making a difference in the healthcare system.

Laurel Gillespie – Patient Advisor

Mrs. Gillespie is passionately committed to raising awareness about issues affecting people with serious diseases such as autism and cancer. She understands government relations and communication from an insider’s perspective, and from that of a patient / caregiver advocate. Laurel has worked on Parliament Hill, run as a candidate federally and provincially, and drafted several private members bills. She served as the Federal NDP Disability Rights Co-Chair under the leadership of Jack Layton. In the spring of 2006 Laurel co-drafted Motion 172 calling for a National Autism Strategy, which was passed by the House of Commons. In 2007, Laurel and Lisa Macleod, MPP for Nepean-Carleton, founded the South Nepean Autism Centre. Laurel also has a solid business background. She is past President and former owner of Spa Concepts, a destination spa consulting company. She has also served as Director of Business Development for Health and Fitness Group International.

 

Laurel was diagnosed with cancer in 2007. Now almost eight years in remission, she brings her straightforward, no nonsense approach to the Life-Saving Therapies Network.  It has helped her develop solid relationships with key players who represent a variety of viewpoints… to raise their awareness of issues and to bring them to together to find practical, helpful solutions.

 

Presently, Laurel works at The Ottawa Hospital Cancer Centre for the Head of Medical Oncology and is a member of the Board of Directors for Autism Canada.

Sabrina Hanna - Senior Advisor

As senior advisor, Sabrina’s role is to bring reform in healthcare in Canada through advocacy & policy, working with stakeholders to understand the issues and the roadblocks and finding solutions to overcoming these.

 

Sabrina works to bring accountability to process’ directly impacting patients’ lives, to improving patient outcomes and collaborating with stakeholders to reform healthcare in Canada for Canadians.

 

Sabrina also serves as a member of the Innovative Medicines Canada (IMC) Patient Advisory Committee (2017)
Sabrina graduated from Concordia University, in Montreal, with a Bachelor’s of Science in Exercise Science. After receiving her B.Sc. she earned a certificate in public relations. Sabrina has dedicated her career to the not-for profit sector, beginning her professional career working in research at the Jewish General Hospital.

Medical and Research Members/Advisors

Gerald Batist, M.D. - Oncologist

Dr. Batist was Chair of the Department of Oncology, McGill University from 2001 until 2011. He initiated and led the the McGill Centre for Translational Research in Cancer, which was established to stimulate rapid translation of new discoveries in the research laboratory into clinical benefits for patients. Along with a growing nucleus of clinician-scientists, he was successful in obtaining a major award from the Canada Foundation for Innovation led to expansion and to the creation of the Segal Cancer Centre at the JGH, which he also directs.

 

His research programs are in novel therapeutics, and he has made significant contributions to the development of new cancer treatments. Dr. Batist leads a highly successful laboratory and clinical research program, and has published over 200 scientific publications and a number of book chapters relating to his research interests. He also leads major Quebec, Canadian and international consortia that focus on personalized medicine, including a recently awarded Canadian National Centre of Excellence. In his capacity as Chairman of Oncology at McGill, he nurtured the development of a number of multidisciplinary programs that have been highly innovative and amongst the first of their kind in Canada. He has trained many scientists and clinical oncologists, and also practices medical oncology.

 

In September 2011, Dr Batist was made a Fellow of the Canadian Academy of Health Sciences. In March 2012, Dr. Batist was appointed Deputy Director of the Lady Davis Institute.

 

Dr. Batist was born in Montreal, and though he was at University in New York City, he returned for medical school at McGill University. This was followed by post-doctoral training in New York, Boston and finally at the National Cancer Institute in Washington. There he trained in medical oncology and in molecular pharmacology.

Phillip D. Bonomi, M.D. - Oncologist

Dr. Philip D. Bonomi is a Professor of Medical Oncology and Internal Medicine at the Rush University Medical Center in Chicago, an institution has been consistently ranked among the best hospitals in the Unites States. He earned his medical degree at the University of Illinois College of Medicine at Chicago, did his residency at Geisinger Medical Center in internal medicine and followed up with a fellowship in medical oncology at Rush University Medical Center.  His primary area of interest is thoracic and cardiothoracic oncology, with specialties in lung cancer and mesothelioma.  He has been the recipient of several awards and distinctions, such as America’s Top Doctors, America’s Top Doctors for Cancer, the Compassionate Doctor Recognition and the Patient’s Choice Award. Dr. Bonomi is considered one of America’s leading experts on lung neoplasm and non-small-cell lung cancer. He has lectured widely both nationally and internationally, and pursues substantial research in the area of lung cancer, in which he has published extensively, authoring or co-authoring over 150 publications. He is a member of a number of professional associations including the American Society of Clinical Oncology and the International Association for the Study of Lung Cancer. With over three decades of experience in the field of lung cancer research, he has served as the Chairman of the Thoracic Committee for the Eastern Cooperative Oncology Group. His most research has centered on the study of new chemotherapy agents for multi-modality  therapies in the treatment of small-cell lung cancer.

Victor Cohen, M.D. - Oncologist

Dr. Cohen is medical oncologist in the Departments of Medicine and Oncology at the Sir Mortimer B. Davis-Jewish General Hospital specializing in pulmonary oncology.  He joined the Department of Oncology in 2002 after completing a Postdoctoral Fellowship at the MD Anderson Cancer Center, the University of Texas, in Houston, Texas where he was involved in clinical studies of a farnesyl transferase inhibitor. His research interests include clinical trials, molecularly-targeted therapies, cancer prevention and Lung cancer.  He is an Assistant Professor in the Department of Oncology at McGill University, and Member, Montreal Centre for Experimental Therapeutics in Cancer.

Hagop M. Kantarjian, M.D. - Oncologist

Dr. Kantarjian serves as Clinical Consultant of Astex Therapeutics Limited. Dr. Kantarjian serves as the Chairman of the Leukemia Department of the University of Texas, M.D. Anderson Cancer Center. Dr. Kantarjian has been associated with M.D. Anderson Cancer Center since 1981. He is a leading expert in the field of chronic and acute leukemia. Dr. Kantarjian served as Clinical and Scientific Advisor of ChemGenex Therapeutics, Inc. Dr. Kantarjian has been a Member of the Scientific Advisory Board of ChemGenex Pharmaceuticals Ltd. (also known as AGT Biosciences) since October 13, 2004. He has been a Director of American Society Of Clinical Oncology, Inc. since 1983. He serves as a Member of Clinical Advisory Board (now Cactus Ventures, Inc.) at Actinium Pharmaceuticals, Inc. He serves as a Member of the Scientific Advisory Board at Stemline Therapeutics, Inc. He served as a Member of Scientific Advisory Board at Astex Therapeutics Limited. Dr. Kantarjian is a Professor of Medicine of the University of Texas, M.D. Anderson Cancer Center. He has authored and contributed to over 560 medical publications, articles and abstracts. Dr. Kantarjian was a Key Investigator in clinical trials that led to the approval of Gleevec as a treatment for chronic myeloid leukemia (CML). for his accomplishments, he has received awards, including a Leukemia Society of America Scholarship from 1989 to 1994 and a Leukemia Society of America Special Fellow Scholarship from 1982 to 1983. In 1997, he received the first Emil J. Freireich Award for Outstanding Clinical Research at M. D. Anderson. He is board certified in Internal Medicine, Medical Oncology, and Hematology. Dr. Kantarjian received his Medical Degree from the American University of Beirut.

Razelle Kurzrock, M.D. - Oncologist

Dr. Razelle Kurzrock is known for developing the largest Phase 1 clinical trials department in the nation/world while at the University of Texas M.D. Anderson Cancer Center. A central theme of that program was the personalized medicine strategy, embodied in a protocol called PREDICT for Profile-related Evidence Determining Individualized Cancer Therapy. This approach utilized advanced molecular technologies to match patients with targeted cancer treatment that is more likely to work for their individual tumors.

 

At Moores Cancer Center, Dr. Kurzrock’s charge is broad, including not just growing and innovating the center’s clinical trials program, but also heading its newly established Center for Personalized Cancer Therapy. As a physician-scientist, she brings extraordinary expertise and experience in clinical research, business operations, regulatory operations, financial and budget planning, and administrative oversight, in addition to her world-recognized work in translational science. Dr. Kurzrock is also Chief of the Division of Hematology and Oncology in the UC San Diego School of Medicine.

 

Dr. Kurzrock received her MD degree from the University of Toronto and has more than 500 peer-reviewed publications and a uniquely strong record of competitive grant funding within the setting of Phase I program building. She has been the principal investigator of the National Cancer Institute U01 Phase I Studies of Targeted Anti-Cancer Agents [2005 to 2012]. Dr. Kurzrock has four children and lives with her husband Dr. Philip Cohen, a dermatologist, in San Diego.

Natasha Leighl, M.D. - Oncologist

Dr. Leighl is a medical oncologist at the Princess Margaret Hospital, and Associate Professor in the Department of Medicine at the University of Toronto. After receiving her MD from the University of Toronto, Canada, Dr. Leighl completed residencies in internal medicine at the University of Calgary and in medical oncology at the University of Toronto. She subsequently completed a Fellowship in Thoracic Oncology with Dr. Frances Shepherd at the Princess Margaret Hospital in Canada, a Fellowship in Clinical Oncology with Prof. Martin Tattersall at the University of Sydney in Australia, and received her MMSc in Clinical Epidemiology at the University of Newcastle, Australia. Her main interest is in developing new treatments in lung cancer. She is involved in clinical studies of novel agents for the treatment of thoracic cancers, is a member of the Lung Disease Site Group Executive in the NCIC Clinical Trials Group. She is also Co-Chair of the NCIC CTG Committee on Economic Analysis. She has received an American Society of Clinical Oncology Career Development Award, ASCO Young Investigator Award and IASLC Young Investigator Award for her work in developing treatment decisions aids for patients with advanced lung, breast and colorectal cancer. Dr Leighl has served on several committees, including the ASCO International and Lung Educational Committees, the Royal College of Physicians and Surgeons of Canada Medical Oncology Examination Board, and the IASLC Career Development Committee. She is currently President of Lung Cancer Canada and has recently been awarded the OSI Pharmaceuticals Foundation Chair in Cancer New Drug Development at PMH/UHN/University of Toronto.

Alex MacKenzie, Ph.D., M.D. - Physician / Researcher

Dr. MacKenzie is principal investigator at the Children’s Hospital of Eastern Ontario in Ottawa (CHEO) Research Institute, Principal Investigator, Apoptosis Research Centre and a Professor in the Department of Medicine at the University of Ottawa. He is a specialist in the field of Spinal Muscular Atrophy, where he has published extensively in the areas of molecular genetics of pediatric disease. Dr. MacKenzie and his team are developing a strategic toolbox and preclinical research pathway for inherited disorders and orphan diseases, including cancers. The lab has identified gene subsets for three disorders – Duchenne Muscular Dystrophy, Myotonic Dystrophy, and Spinal Muscular Atrophy – and the goal is to broaden the research to include other genetic disorders. He is also a practicing physician in the Division of Endocrinology at CHEO.

Wojciech Morzycki, M.D. - Oncologist

Dr. Morzycki obtained a Doctor of Medicine degree in 1988 from Pomeranian Medical University, Szczecin, Poland. After moving to Nova Scotia, he subsequently specialized in Immuno-Pathology, Internal Medicine and Medical Oncology. Hs is an Associate Professor at Dalhousie University and a Medical Oncologist at the Queen Elizabeth II Health Sciences Centre in Halifax, Nova Scotia. He is a Principal Investigator for a number of clinical studies on lung cancer, mesothelioma and cancers of unknown primary, which are his main areas of clinical care and research. He is also a member of the Provincial Thoracic Cancer Site Team and is actively involved in undergraduate, postgraduate and continuing medical education at Dalhousie University. He has been a member of Health Canada’s Scientific Advisory Committee on Oncology Therapies.

Robert Nagourney, M.D. - Oncologist

Robert A. Nagourney, M.D., is Medical and Laboratory Director at Rational Therapeutics, Inc., in Long Beach, California, and a Clinical Professor, University of California Irvine, Department of Obstetrics and Gynecology.  He is board certified in internal medicine, medical oncology, and hematology.

 

Dr. Nagourney completed undergraduate education at Boston University, earning a B.A. in Chemistry (Summa Cum Laude, Phi Beta Kappa with Distinction in Biochemistry).  He received his M.D. at McGill University in Montreal, Canada, where he was a University Scholar.  After completing his residency in Internal Medicine at the University of California, Irvine, Dr. Nagourney received fellowship training in Medical Oncology at Georgetown University in Washington, DC.  He went on to complete a second fellowship in hematology at the Scripps Institute in La Jolla, California, where he was the recipient of the Scripps Institute Young Investigator Award.

 

Dr. Nagourney founded Rational Therapeutics, a cancer research institute located in Long Beach, California that has pioneered the development of “functional profiling” in human tumors.  The functional profiling platform uses human tumor microspheroids in primary culture to measure drug induced programmed cell death, both apoptotic and non-apoptotic. It has proven a robust method for the prediction of clinical response to therapy. Following its successful application to cytotoxic drugs and radiation, this platform has now been successfully applied in the development of novel compounds, drug combinations and to the study of signal transduction inhibitors and “targeted” agents.

 

With over 20 years’ experience in human tumor primary culture analyses, Dr. Nagourney has authored more than 100 manuscripts, book chapters and abstracts including publications in the Journal of Clinical Oncology, Gynecological Oncology and The Journal of National Cancer Institute.  Dr. Nagourney is recognized for the introduction of Platin/Gemcitabine doublets to the treatment of advanced ovarian and breast cancer. A frequently invited lecturer for numerous professional organizations and universities, Dr. Nagourney has served as a reviewer and on the editorial boards of several journals including Clinical Cancer Research, British Journal of Cancer, Gynecologic Oncology, Cancer Research and the Journal of Medicinal Food. Dr Nagourney resides in Long Beach, California with his wife and two sons.

 

Dr. Nagourney also maintains an informative blog on the latest in cancer treatment and research along with related issues.  Please click here to read past articles and/or to sign up to receive new blog posts as soon as they are released.

Joan Schiller, M.D. - Oncologist

Dr. Schiller is Professor and Chief of the Hematology/Oncology Division at UT Southwestern Medical Center, Deputy Director of Simmons Cancer Center, and holder of the Andrea L. Simmons Distinguished Chair in Cancer Research. She graduated from the University of Illinois Medical School and completed her internship and residency in Internal Medicine at Northwestern Hospital in Chicago. She also completed a clinical fellowship in the Department of Human Oncology at the University of Wisconsin Clinical Cancer Center, before joining the faculty there. Dr. Schiller is board certified in Internal Medicine and Medical Oncology and was a Professor of Medicine in the Department of Medicine Section of Oncology at the University of Wisconsin in Madison until moving to UT Southwestern in 2006. In addition to her clinical responsibilities, Dr. Schiller is active in Phase I, II, and III clinical trials, and her research interests involve drug development and experimental therapeutics. She is an Associate Editor of the Journal of Clinical Oncology, former Chairman of the Thoracic Oncology Committee of the Eastern Cooperative Oncology Group, and Founder and President of Free to Breathe, a partnership for lung cancer survival. Dr. Schiller has published numerous articles related to the diagnosis and treatment of lung cancer and is internationally recognized for her work in this area.

Sandy Sehdev, M.D. - Oncologist

Dr. Sehdev is currently a medical oncologist at The Ottawa Hospital Cancer Centre and Lecturer at the University of Ottawa, focusing on the treatment of breast, genitourinary cancers and melanoma. As well, he is co-director and founding member of the Physician Alliance for Cancer Control and Treatment (Canada), an oncologist led advocacy coalition. His other interests include medical education and applications of technology in medicine.

 

Sandy attended medical school at the University of Ottawa (Canada) with subsequent training in medical oncology at the University of Toronto and The Princess Margaret Cancer Centre (1991). He worked at The William Osler Health System serving a large Toronto area suburban community for 25 years. While there he was Chief of the Pharmacy & Therapeutics Committee (5 years), long term lead of the clinical trials program (oncology) and continuing medical education (oncology). He is a past lead of CME for the Community Oncologists of Metropolitan Toronto (COMET), and a past Director of the Cancer Advocacy Coalition of Canada.

Paul Wheatley-Price, M.D. - Oncologist

Dr Paul Wheatley-Price attended medical school in the UK, at the University of St. Andrews (1991-1994) and the University of Manchester (1994 – 1997), subsequently training in internal medicine in Manchester and London. He then received specialist medical oncology training in Wellington, New Zealand (2001 – 2003), in London at the Royal Free Hospital, Guy’s and St. Thomas’ Hospitals and St. George’s Hospital (2003-2006), and then became a Fellow in Lung Cancer Research at Princess Margaret Hospital, Toronto, under the supervision of Dr. Frances Shepherd (2007-2008).

 

Since September 2009, Dr. Wheatley-Price has been on faculty at The Ottawa Hospital Cancer Centre / University of Ottawa as an Assistant Professor in Medical Oncology. He teaches / mentors at the University of Ottawa Medical School, and has won prizes for excellence in teaching. In 2014, he became Chair of the Medical Advisory Committee for Lung Cancer Canada.

 

Clinically, he treats lung cancer and breast cancer. He also has an active role in the regulatory processes of opening clinical trials. His research interests are in thoracic oncology (with a sub-interest in mesothelioma and thymic malignancies); in developing prognostic tools in understudied clinical scenarios, and in research and education programs in the area of advance decision making.

Patient and Patient Advocate Members/Advisors

Be the Choice - Patient Advocate Organization

Be the Choice is a Canadian non-profit organization dedicated to making breast cancer treatment information accessible and participatory. Be the Choice has built an interactive, fully bilingual, digital platform that enables patients and their advocates to navigate the labyrinth of clinical terms and pathways that accompany a diagnosis. The tool was designed by medical professionals and patients and is available at bethechoice.org. The goal of the tool is to help users learn the basics about breast cancer, see the range of treatment options available, and empower patients to participate in more informed conversations with their medical providers.

Louise Binder, LL.B. - Patient Advocate

Louise Binder is a lawyer who has been involved in informing the development of health policy and systemic treatment access practices from a patient perspective for more than 20 years. She started her work in this area in the HIV community in the early 1990s after her own diagnosis and before effective treatments were available for HIV. She cofounded the Canadian Treatment Action Council (CTAC) in 1996 that successfully ensured access to treatments and quality care for people living with HIV by working with the federal and provincial governments and other relevant stakeholders to enhance drug review and approval systems, pricing policies and access to liver transplants for this community. She wrote a paper on Universal Drug Coverage a decade ago while Chair of CTAC. She had a special interest in women’s issues, chairing the Ontario women’s organization Voice of Positive Women for over a decade. She has been involved in these issues internationally as well. Two years ago Louise began similar work in the cancer area and is presently Health Policy Consultant for the Canadian Cancer Survivor Network years ago.

 

She has been recognized by many organizations for her work including receiving an Honorary Doctorate of Laws from her alma mater Queen’s Law School, the Order of Ontario from the province of Ontario and two Queen Elizabeth II medals.

Canadian Cancer Survivor Network (CCSN) - Patient Advocate Organization

CCSN (www.survivornet.ca) is a network of patients, survivors, friends, families, community partners and sponsors who work together to promote the very best standard of care, support, follow up and quality of life for patients and survivors. CCSN has a broad mission. It includes (a) researching ways to alleviate barriers to optimal patient care; (b) empowering collaborative action by cancer patients, families and communities to identify and work to remove barriers to optimal patient care; (c) ensuring that cancer survivors have access to education and action opportunities to have their voices heard in planning and implementing an optimal health care system; and (d) educating the public and policy makers about the financial, emotional and health costs of cancer and offer considered, positive ideas and recommendations to alleviate their effects.

Cancer Advocacy Coalition Canada (CACC) - Patient Advocate Organization

Published annually since 2000, the CACC’s annual Report Card on Cancer in Canada is the country’s only independent evaluation of cancer system performance. CACC (http://www.canceradvocacy.ca) is a registered, non-profit cancer group dedicated to citizen advocacy, public education, policy research and evaluation of cancer system performance. Their goal is to promote an effective, comprehensive, evidence-based cancer system that offers Canadians the best chances for preventing and treating this disease, and addresses the emotional, physical and financial needs of patients and survivors.

Colorectal Cancer Association of Canada (CCAC) - Patient Advocate Organization

CCAC, http://www.colorectal-cancer.ca/,  is a national, non-profit, patient-based organization dedicated to increasing awareness of colorectal cancer, supporting patients, and advocating for population-based screening and timely access to effective treatments. CCAC comprises volunteers, members, and management led by a board of directors.  An expert medical advisory board, made up of top healthcare professionals in the field of colorectal cancer, provides counsel to ensure CCAC members are kept abreast of the latest medical advances in the diagnosis and treatment of the disease.

 

CCAC’s mandate is threefold: awareness, support, and advocacy. To increase awareness and educate the public, CCAC participates in health forums and conferences, distributes educational material, holds free information sessions, and produces public service announcements for television, radio and print. Support groups across the country connect patients, survivors and caregivers. As advocates, CCAC interacts with politicians and officials through roundtable discussions, press conferences, and educational events to promote effective policy. As issues evolve, the CCAC remains at the forefront making sure patients’ needs are heard.

Pam Devine, LL.B. - Patient Advocate and Advisor

Pam is a retired civil servant who is has been a caregiver for members of her family that have been afflicted with severe medical issues. She held progressively senior legal and policy advisory positions during a career that spanned 1971 to 1996, often in regulatory frameworks. She welcomes the opportunity to participate in this patient-oriented Life-Saving Therapies Network with its emphasis on improving quality of life for individuals with deadly diseases.  Highlights in her career include serving as a senior advisor to the Privy Council Office and the Federal-Provincial Relations Office on substantive policy issues related to Quebec-related constitutional issues. She also represented Canada on official government delegations to the United Nations (U.N.) and Organization for Economic Cooperation and Development (O.E.C.D).  This work involved the links among migration, development assistance and human rights, and the implications of these links for Canadian domestic and foreign policy. She also managed a research team that supported Justice Canada lawyers on First Nations litigation matters, and helped design and start-up of an aboriginal economic development program, controlled by an aboriginal-majority advisory board and targeted at supporting small businesses and community-based financial institutions. Following her retirement from the federal public service, Ms. Devine worked for the Assembly of First Nations in Ottawa on health and governance issues and on an administrative review process aimed at improving the effectiveness of the organization’s advocacy activities. Pam is a graduate of the University of Ottawa (B.A. 66’ and LL.B 70’).

Martine M. Elias, B.Sc., M.Sc. - Patient Advocate

Starting her career in clinical research in the pharmaceutical industry, Martine has dedicated her career to helping patients get access to innovative medical treatments. She is a strong believer in ensuring the patient voice is included in all aspects of health policy decisions.

 

Martine is the Director Access, Advocacy and Community Relations at Myeloma Canada. Her role is to develop, lead and execute all advocacy strategies and programs for Myeloma Canada and support the Board of Directors in its goals of shaping access to new therapies and strengthening the Myeloma Canada patient and caregiver community across Canada. Martine has served as the Director, National Patient Engagement Strategy at JANSSEN Inc., with responsibilities for developing and executing an industry-leading national patient engagement strategy. She was also part of an international advocacy team working on a global patient advocacy strategy that engaged with patient groups in various countries around the world. She has been a tireless champion of patient advocacy and improved patient access to medications. Before that, she was National Director of Community Relations where she led the development of patient education, advocacy and access strategies. She has also been Vice-Chair of Rx&D’s (Canada’s pharmaceutical industry association) Stakeholder Strategic Advisory Team, whose role was to advise the Rx&D Board on strategic stakeholder relationship initiatives and best practices.

 

Prior to joining JANSSEN, Martine worked in clinical research at GSK (GlaxoSmithKline), before being appointed the Market Access and Health Economics team leader. Fully bilingual, Martine has a B.Sc. in Biology from the Université de Montréal and a Master’s of Science in Marine Mammal Biology from the University of Guelph.

Andrea Stern Ferris, MBA - Patient Advocate

Andrea became involved with lung cancer advocacy following her mother’s death from the disease in 2008. After receiving a diagnosis of stage IV lung cancer in 2006, Andrea’s mother underwent numerous treatments and clinical trials at several major academic institutions to no avail. Together with her father, Andrea was her mother’s primary caregiver during this time. Determined to drive more money into lung cancer research, Andrea left the successful software company that she helped launch, to found Protect Your Lungs, an organization focused 100% on funding early detection research. In 2010, Andrea merged Protect Your Lungs with LUNGevity, a Chicago based organization, to form the nation’s leading lung cancer focused non-profit.

 

Andrea’s strong business background combined with her connections to the worlds of research and advocacy have enabled her to build the preeminent patient advocacy organization in the lung cancer space. LUNGevity funds translational research into both early detection and more effective treatments of lung cancer as well as a highly coveted Career Development Awards program. LUNGevity also fills unmet needs for people diagnosed with lung cancer by providing education, support and survivorship programs. Recognizing the need to build awareness and understanding about lung cancer, LUNGevity has built the largest grassroots network of events and advocates across the country.

Fight To Live – Patient Advocate Organization

Founded in 2011 by Carla Woods, who spent her career in the biomedical industry, FIGHT TO LIVE (www.fighttolive.org) is driving reform to bring access to promising therapies to people fighting deadly diseases. Based in the USA, FIGHT TO LIVE is working with other organizations, including LSTN, to modernize the regulatory system to spur progress in treatment development and eliminate unnecessary premature deaths.

 

Efforts to bring drugs to market are thwarted by a regulatory framework that is shackled by rigid, outdated guidelines and irrelevant to today’s medical breakthroughs. Most important innovations come from small venture backed biotech firms and not Big Pharma, which occasionally buys an innovative breakthrough drug company/product. The rest of the small biotech firms have to fend for themselves, usually unsuccessfully.  Cumbersome and inefficient regulations make the risk, time and cost of developing new drugs too high…  venture funding is walking away from the US medical products industry, leaving little hope to bring the vast majority of medical breakthroughs to patients…  Every day, people jump out of airplanes, scuba dive, ski, ride motorcycles and do other things that can result in death, just for fun. But, when we have a lethal disease, the government prevents us from accessing life-enhancing and potentially life-saving treatments—solely for bureaucratic and technocratic reasons..  This is an issue of our civil rights.  Understanding this problem is something you don’t want to realize AFTER you find out you have a terminal disease.  By then, you will not have the time or the ability to fight for your rights before you may lose the ultimate fight.

-FightToLive.org

Free to Breathe - Patient Advocate Organization

Free to Breathe (www.freetobreathe.org) is a partnership of lung cancer survivors, advocates, researchers, healthcare professionals and industry leaders are united in the belief that every person with lung cancer deserves a cure. The organization comprises regional networks with local staff and advocates engaged in grassroots awareness and fundraising activities throughout the USA. Regional networks include the Midwest, South Central, Mid-Atlantic, Pacific Southwest, Ohio valley, and Northeast.

Laurel Gillespie - Patient Advocate

Mrs. Gillespie is passionately committed to raising awareness about issues affecting people with serious diseases such as autism and cancer. She understands government relations and communication from an insider’s perspective, and from that of a patient / caregiver advocate. Laurel has worked on Parliament Hill, run as a candidate federally and provincially, and drafted several private members bills. She served as the Federal NDP Disability Rights Co-Chair under the leadership of Jack Layton. In the spring of 2006 Laurel co-drafted Motion 172 calling for a National Autism Strategy, which was passed by the House of Commons. In 2007, Laurel and Lisa Macleod, MPP for Nepean-Carleton, founded the South Nepean Autism Centre. Laurel also has a solid business background. She is past President and former owner of Spa Concepts, a destination spa consulting company. She has also served as Director of Business Development for Health and Fitness Group International.

 

Laurel was diagnosed with cancer in 2007. Now almost eight years in remission, she brings her straightforward, no nonsense approach to the Life-Saving Therapies Network. It has helped her develop solid relationships with key players who represent a variety of viewpoints… to raise their awareness of issues and to bring them to together to find practical, helpful solutions.
Presently, Laurel works at The Ottawa Hospital Cancer Centre for the Head of Medical Oncology and is a member of the Board of Directors for Autism Canada.

Heather Hogan B.A., B.Ed., M.Ed. - Patient Advocate

Heather Hogan was born and raised in New Brunswick. In September 2012, she was diagnosed with Stage 3a Non-small cell Adenocarcinoma lung cancer and given a 15% chance of surviving 5 years. She endured two lung surgeries, four rounds of chemotherapy and 25 radiation treatments. Since finishing treatments, Heather has shown no signs of the disease.

 

Seeing a need for cancer support in her small town, Heather, along with two other cancer patients, began a Cancer Support group for both patients and caregivers. Heather has recently retired from a long career in teaching which has given her the opportunity to dedicate time to advocating for, and educating people about Lung Cancer by meeting with politicians, doctors, researchers and fellow advocates from across Canada and the United States. Her goal is to reduce the stigma related to lung cancer and to advocate for more funding, research and early detection of the disease.

 

Lung cancer advocacy has lead Heather to contacts with other organizations like Lung Cancer Canada and the Life Saving Therapies Network who are working to improve patient care in Canada.

Marcia K. Horn, B.A., J.D. - Patient Advocate

Marcia K. Horn has been President and CEO of the International Cancer Advocacy Network (ICAN) since 1996. Based in Phoenix, ICAN’s mission is to accelerate the anticancer drug pipeline at every level. One of the most effective cancer patient advocacy organizations in the USA, its Personalized Medicine Cancer Case Navigation Programs cover every cancer and cancer subtype and emphasize molecular diagnostics and gene expression profiling. Under Marcia’s leadership, ICAN has received Top-Rated Health Care Organization (2011, 2012, 2013, 2014, and 2015) and the number one Top Rated Breast Cancer Organization (2012) awards from GreatNonprofits. In November, 2014, ICAN was selected as the patient advocacy organization for the Stand Up 2 Cancer Dream Team “Molecular Early Detection of Colon Cancer,” working with Dream Team Leader Gerrit Meijer, MD, PhD of the Netherlands Cancer Institute and Dream Team Co-Leader Victor Velculescu, MD, PhD of Johns Hopkins. Its newsletter is consistently rated as one of the best in the country.

 

In 2007, Marcia was named an Affiliate Member of the American Society of Clinical Oncology (ASCO). In 2012, she was selected for the Drug Information Association’s (DIA) Patient Advocate Fellowship Program. In January 2013, she became the inaugural chairman of the DIA’s national Patient Engagement Community and was a grant reviewer for PCORI, the Patient-Centered Outcomes Research Institute. In 2014, Marcia was named a PCORI Ambassador. In June 2012, Marcia was named to the Banner MD Anderson Institutional Review Board (IRB) Oncology Panel and in 2013, Marcia was a Finalist for the Organization of Non-profit Executives’ “Director of the Year” Award (in the Leader of Distinction category).   In February, 2015, Marcia was named to the DIA Editorial Board and in April 2015 co-authored an article for the DIA Global Forum with Eric Racine of Sanofi, “Are You Ready? Patient Empowerment is Here to Stay.” In March, 2016, Marcia was named the Patient Advocate for the SWOG (Southwest Oncology Group) Early Therapeutics and Rare Cancers Committee, which is part of the National Clinical Trials Network.  In March, 2009, Marcia was named a Foundation Associate of WBL, Women Business Leaders of the U.S. Health Care Industry Foundation, which is fast becoming one of the most prominent organizations for top women in health care. In October, 2009, she was asked to join The Health Alliance, a select group of leading women in health care.

 

Marcia graduated Phi Beta Kappa from Stanford University in 1977 in Political Science and received her J.D. from Stanford Law School in 1980. A member of the State Bar of Arizona for over 32 years, she is admitted to practice before the U.S. District Court, the Ninth Circuit Court of Appeals, and the U.S. Supreme Court. She was a commercial litigator at Streich Lang Weeks & Cardon, P.A. and later in her own practice, specializing in motion practice and the pretrial preparation of complex cases (trained by Ronald Jay Cohen, Dan M. Durrant, Deana S. Peck, Robert E. B. Allen, and the Honorable Michael Yarnell) as well as appellate litigation (mentored by William S. Hawgood II). In 1989, she was interviewed by the Judicial Nominating Commission for Judge of the Superior Court of Maricopa County. Marcia has also handled political asylum cases and State Department visa matters for Russian Jewish immigrants on a pro bono basis since 1990. She is an expert in non-profit board governance, lobbying and legislative activities, board development, ethics, accountability, transparency, and Form 990 issues.

 

Marcia has also served on major non-profit civic and Jewish community boards and was the first two-term president of the Arizona Opera League in 1986. From 1986 to 1988, Marcia chaired the Attorneys’ Division for the Jewish Federation of Greater Phoenix. She served as Vice Chairman of the United Jewish Campaign in Phoenix in 1987. She was named the first Arizonan to the United Jewish Appeal’s National Business and Professional Women’s Council. Marcia received the Jewish Federation of Greater Phoenix’s Lee Amada Young Leadership Award in 1989. Following a sabbatical in Israel for six months in 1990, she directed The Taste of Israel radio show (music/news/ interviews) from 1991-1992 on KLFF AM 1360 in Phoenix and oversaw advertising, marketing, and fundraising for the radio program. Marcia’s arts activism is influenced by having attended the Academy of the Washington Ballet in Washington, D.C. studying under Mary Day, Anne Bena, Martin Buckner, and Nolan Dingman. The ballet class ethic which encourages an unrelenting pursuit of perfection has served as a guidepost for her work in law, political consulting, non-profit management, and the War on Cancer.

Pat Kelly, M.A. - Patient Advocate

Pat Kelly became an advocate when, as a young mother working in immunology research at McMaster University, she was diagnosed with breast cancer. In response to the isolation and lack of information available at that time, Pat helped establish support groups and grassroots networks of cancer survivors, including Burlington Breast Cancer Support Services, the Ontario Breast Cancer Network (Willow), the Canadian Breast Cancer Network, Best Medicines Coalition, the Cancer Advocacy Coalition of Canada and the Campaign to Control Cancer/National Cancer Leadership Forum. Pat joined with other advocates and lobbied for policy changes to improve patient care and treatment, accelerated reform of Canada’s drug review system, and raised $500M in federal funding for cancer control.  Along with co-author Dr. Mark Levine, Pat Kelly published 6 editions of the book, What You Need To Know About Breast Cancer by Key Porter Books, along with three manuals for group facilitators, including “Leadership From The Heart: A Guide for Self-help Groups”, which was published by Key Porter Books (2000). Pat was also a founding Editor of the “Report Card on Cancer Care in Canada”. After earning a Masters of Arts in Adult Leadership and Learning from Royal Roads University, she established a consulting practice, utilizing the Collective Impact model for social change and advocacy. Pat is the proud and happy mother of two accomplished daughters and their loving partners and two precious granddaughters.  Pat and her family live in Ontario, Nova Scotia and in the mountains of Western North Carolina.

Lung Cancer Canada - Patient Advocate Organization

Lung Cancer Canada is a national organization whose mission is to increase awareness about lung cancer, support patients living with lung cancer and the individuals who care for them and provide educational resources to lung cancer patients, their family members and health care professionals.

LUNGevity Foundation - Patient Advocate Organization

LUNGevity is the nation’s leading lung cancer organization investing in lifesaving, translational research and providing support services and education for patients and caregivers. LUNGevity’s goals are three-fold: (1) accelerate research to patients, (2) empower patients to be active participants in their treatment decisions, and (3) remove barriers that patients face in accessing the right treatments.

 

LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as by providing community, support, and education for all those affected by the disease. LUNGevity’s comprehensive resources include a medically vetted website, a toll-free HelpLine in partnership with CancerCare®, a unique Lung Cancer Navigator app, peer-to-peer mentoring for patients and caregivers (LUNGevity LifeLine), and survivorship conferences. LUNGevity also helps patients find and navigate clinical trials through our Clinical Trial Finder tool, a Clinical Trial Ambassador program, and participation with EmergingMed.

 

For more information about LUNGevity Foundation, please visit www.LUNGevity.org.

Lisa Machado - Patient Advocate

Lisa Machado is the founder of The Canadian CML Network, a Toronto-based national organization dedicated to providing educational, emotional and social support to people living with chronic myelogenous leukemia (CML) and those who care about them. A journalist when she was diagnosed in 2008, Lisa now spends her time advocating for patients, and helping health care providers and industry groups achieve a greater understanding of what it means to be a patient. Lisa also writes a regular column called Tilt, for the website CML-IQ.

 

The Canadian CML Network runs regular patient meetings, and also hosts an annual “Living Well with CML” educational conference in different cities across Canada. In September 2015, the Network published its first book, “Living Well with CML: What you need to know to live your best life with Chronic Myelogenous Leukemia.” To order a copy, email info@cmlnetwork.ca.

Susan Marlin - Patient Advocate

Susan Marlin is the President and CEO of Clinical Trials Ontario (CTO), an organization established by the Province of Ontario in 2012 to make Ontario a preferred location for global clinical trials while maintaining the highest ethical standards. She has led the establishment of the CTO and the implementation of a province-wide streamlined research ethics review system. Prior to serving in this position she spent a decade working in research administration at Queen`s University, most recently serving as the Associate Vice-Principal of Research. Before this Susan worked with the National Cancer Institute of Canada Clinical Trials Group for many years, initially coordinating cancer clinical trials and later leading the development and implementation of the Ethics and Regulatory Office.

 

Susan has been actively engaged in research ethics over the years and has served on several research ethics committees. She served as President of the Canadian Association of Research Ethics Boards, as a member of the Canadian Institutes of Health Research (CIHR) Research Integrity Committee, the Ontario Cancer Research Ethics Board and the Tri-Agency Panel on the Responsible Conduct of Research. Susan serves on several boards and committees supporting clinical research and innovation in health care including the National Advisory Group for the Canadian Clinical Trials Coordinating Centre and the Management Team for the Ontario SPOR (Strategy for Patient Oriented Research) Support Unit.

 

Susan was born and raised in Halifax, Nova Scotia. She holds a BSc (Hons) from Dalhousie University, and an MSc in Community Health and Epidemiology from Queen’s University. She was awarded the Queen’s Elizabeth II Diamond Jubilee medal in 2012 in recognition of her work in support of military and veteran health research.

Deborah Maskens, M.A., M.S.M - Patient Advocate

As co-founder of Kidney Cancer Canada (KCC), a national non-profit patient support and advocacy organization, Deb has worked tirelessly as a patient advocate to ensure equal access to high quality care for kidney cancer patients across Canada. As a long-time kidney cancer patient herself, Deb has been highly instrumental as a media spokesperson, government advocate, and peer supporter for fellow patients.

 

Deb has previously served as a Board Director of the Canadian Cancer Advocacy Coalition (CACC) and served as Chair of the Drug Access Working Group, Canadian Cancer Action Network (CCAN). Currently, she is the Past Chair of Kidney Cancer Canada and Vice Chair of the International Kidney Cancer Coalition based in Amsterdam. In Canada, she is leading a coalition campaign of 35 cancer organizations (CanCertainty) for full coverage of oral/take-home cancer medications in all provinces: www.cancertaintyforall.ca. Most recently Deb has been awarded the Canadian Governor General’s Meritorious Service Medal, Canada’s highest award for dedication and professionalism in volunteer service.  Twitter: @DebMaskensKCC

Alies Maybee - Patient Advisor

Alies Maybee is a passionate patient advisor engaged in healthcare renewal through collaborative partnerships with patients, families and healthcare providers. Her work is informed by her background as patient and caregiver, as a business analyst for technology companies, and as a partner in a brand consultancy. Alies works with Health Quality Ontario developing performance measures from the patient perspective. September 2014 she presented to the Senate working group on Bill C-17, An Act to amend the Food and Drugs Act. She leads the Patients Canada  SPOR Demonstration project piloting patient partners on research teams and the use of patient experience to drive research. Since November 2012 Alies has been on the Research Management Committee of TVN, a Centre of Excellence for improving care for the frail elderly. As such, she helps set research strategy, evaluate proposals and make funding decisions. She also participates on their citizen engagement working group looking at how best to involve patients and families in research. At her local hospital, Alies is a member of the newly formed Community Engagement Council, the result of her work on an earlier group led by the VP Quality Strategic Information and Performance Systems to determine the future shape of patient participation at the hospital.  And she is one of two initial PFAs (patient and family advisors) piloting the involvement of patients in the hospital. Through Patients Canada – for which she is a speaker and advisor – and directly, she has participated in many projects and panels on various aspects of healthcare.

Bray Patrick-Lake, B.S., M.F.S. - Patient Advocate

As the Director of Stakeholder Engagement for Duke Clinical Research Institute, Bray Patrick-Lake supports efforts to actively engage patients, health advocacy organizations, and other stakeholders in local and national research programs. She has led extensive efforts through the Clinical Trials Transformation Initiative to incorporate patient voice into clinical trial design, conduct, oversight, and regulatory frameworks, as well as improvement of the clinical trial enterprise. She co-chaired the Advisory Committee to the NIH Director’s Working Group responsible for authoring the vision and roadmap to launch the Precision Medicine Initiative Cohort Program (now All of Us). She served as the Interim Director of Engagement for several months the after program launched and became the All of Research Program, for which she currently serves on the National Advisory Panel. She also leads engagement work at Duke’s Coordinating Center for the NIH Environmental Influences on Child Health Outcomes (ECHO) program and serves on the National Academies of Science, Engineering, and Medicine Health Science Policy Board.

 

Ms. Patrick-Lake founded a nonprofit disease advocacy organization for cardiac patients and served as a patient representative at the FDA on a variety of advisory committees and panels, in workgroups for EMA, IMI, NIH, and NAM/IOM, and as a patient stakeholder or co-investigator for AHRQ and PCORI research projects. She’s been a member of the PCORnet Coordinating Center’s Executive Leadership Committee where she developed patient engagement strategies. She is member of the America Cancer Society’s Clinical Trials Steering Committee and has served on the MDEpiNet’s National Medical Device Registry Task Force, the Medical Device Innovation Consortium’s Patient-centered Benefit-Risk Steering Committee, American College of Cardiology (ACC) Foundation’s Patient-centered Care Shared Decision Making and Patient-generated Health Data working groups, and the ACC Transcatheter Valve Therapy Registry Stakeholder Advisory Committee. She currently also serves as a PCORI reviewer and ambassador.

Patrick Sullivan, LL.B. - Patient Advocate

Patrick is a passionate childhood cancer advocate. He became an advocate after his son Finn was diagnosed
with Rhabdomyosarcoma in 2007 and he heard the word “incurable” for the first time. Patrick serves as
President of the Team Finn Foundation, a volunteer based organization dedicated to
raising childhood cancer awareness and which carries Finn’s name. Since 2009, the Team Finn Foundation has
raised over two million dollars for pediatric cancer research.  Patrick is also Chair of Ac2orn, which advocates for childhood oncology research.

 

Patrick other ongoing commitments include: Chair of Bio-CanRX Cancer Stakeholder Alliance; Member of
Terry Fox Research Institute Regional Advisory Counsel; Director Childhood Cancer Canada; Member CCCTN
Research Ethics Board Accreditation Committee, PPI Committee and Scientific Advisory Committee;
CAPTUR Trial Committee; and others.

 

By profession, Patrick is a securities and corporate-commercial litigator and a founding partner of Taylor
Veinotte Sullivan.

Team Finn Foundation - Patient Advocate Organization

Team Finn is a volunteer based organization dedicated to raising childhood cancer awareness and to raising funds for cutting edge paediatric cancer research.  Team Finn is named after and celebrates the life of Finn Sullivan.

 

Team Finn participates in various events including the Ride to Conquer Cancer, the BMO Vancouver Marathon, the Vancouver Triathlon and PJs with a Purpose, a grass roots initiative that takes place at schools throughout Vancouver.

 

Since 2009, the Team Finn Foundation has raised over two million dollars.  Aside from participating in and organizing various events to raise funds and childhood cancer awareness, Team Finn works closely with pediatric cancer researchers and clinicians to help bridge gaps and quicken the pace of cancer research.

 

Team Finn continues to expand its efforts while staying true to the spirit of Finn: a boy who lived to love and loved to Run Jump Bounce Dance Sing Smile Love and Ride every moment he was given.

Triage Cancer - Patient Advocate Organization

Triage Cancer is a U.S. national, nonprofit organization providing information and resources on the full spectrum of cancer survivorship issues to patients, survivors, caregivers, advocates, and healthcare professionals. They are dedicated to improving access to, and availability of, quality information on cancer and related healthcare-related issues through a national Speakers Bureau, educational events, and online tools. Triage Cancer also offers an educational blog at http://TriageCancer.org/blog.

Health Care and Public Sector Members/Advisors

Clinical Trials Ontario

Clinical Trials Ontario (CTO) is an independent not-for-profit organization established with support from the Government of Ontario. Our mandate is to work collaboratively with the clinical trials community, the public and strategic partners to improve Ontario’s clinical trials environment and bring more trials to the province, while supporting the highest ethical and quality standards.  CTO’s mandate is advanced through three key strategies:

  1. Streamline processes to support the timely, efficient and cost-effective conduct of high-quality clinical trials.
  2. Support and promote public and patient engagement with clinical trials.
  3. Promote Ontario’s competitive advantages and clinical trial capacities to attract more clinical trial investment.
Kirk Hartley, B.S, J.D. - Lawyer

Kirk Hartley is a trial lawyer and consultant with a passion for the intersections between law and science, including the medical and legal principles involved in many aspects of cancer.  His pro bono legal work is focused on articles, presentations and/or litigation regarding the rights of persons with cancer with respect to access to diagnostics and therapies. That work concentrates primarily on efforts to persuade or force private insurers or insurance plan administrators to provide access to precision medicine diagnostics and therapies. Over the years, Kirk has increasingly focused on the growing and changing intersections between molecular science, tort law, corporate law, and insurance, as well as the increasing use of bankruptcies and schemes of arrangement to resolve or limit underlying contingent liability claims. Kirk frequently speaks on and writes about law and science issues, and has been time and again recognized as being part of the top tier of US lawyers.

 

For over 30 years, Kirk has represented commercial clients in business litigation, including winning judgments for some of the largest companies in the US, as well as smaller entrepreneurs. Kirk’s practice has involved advising a wide range of corporations, associations, and individuals as both plaintiffs and defendants, but in different law firm settings.  In June 2011, Kirk created his own law firm, LSP Group LLC, to continue his focus on issues involving law, science and policy. Kirk’s immediate prior practice focused on representing policyholders against insurers for a national insurance coverage boutique (Childress Duffy) that represented policyholders against insurance companies. Kirk also enjoyed over 25 years as a partner in a national law firm (Katten Muchin Rosenman) and, subsequently, a nationally known litigation boutique (Butler Rubin Saltarelli & Boyd). Immediately after law school, Kirk learned many lessons during a wonderful year spent as a law clerk for Howard C. Ryan, Chief Justice, Supreme Court of Illinois.

 

Kirk also is a director in a boutique consulting firm, Gnarus Advisors LLC. Gnarus combines economic, scientific, engineering, and regulatory expertise to provide clients with multidimensional support on a wide range of challenges affecting their financial performance, risk management goals, and dispute resolution efforts. He also writes an independent blog, GlobalTort.com, which focuses on global tort claiming, science, cancer, insurance and mass tort bankruptcies.

Thomas J. Hudson, M.D. - Research Management

Dr. Hudson is President and Scientific Director of the Ontario Institute for Cancer Research (OICR), which focuses on translational research in prevention, detection, diagnosis and treatment of cancer.

 

He is internationally renowned for his work in genomics and human genome variation. At the Whitehead/MIT Center for Genome Research, he led a team that generated physical and gene maps of the human and mouse genomes. Dr. Hudson has been a founding member of the International Haplotype Map Consortium, the Public Population Project in Genomics (P3G) and the International Cancer Genome Consortium. He is a member of the Steering Committee of the Global Alliance for Genomics and Health, which is developing an international framework to allow genetic and clinical data to be collected, managed and shared in an effective, responsible, interpretive manner. Dr. Hudson’s laboratory at OICR is involved in the study of genome variation that affects cancer predisposition, progression, and response to therapy. His main project focuses on the genetic architecture of loci associated with risk of colorectal cancer.

 

Dr. Hudson is Professor in the Departments of Molecular Genetics and Medical Biophysics at the University of Toronto, a fellow of the Royal Society of Canada and an Officer of the Order of Canada. He has co-authored more than 250 peer-reviewed scientific publications.

Don Husereau - Health Economist

Don Husereau is an Adjunct Professor of Medicine at The University of Ottawa, Senior Associate with the Institute of Health Economics, and Senior Scientist at the University for Health Sciences, Medical Informatics and Technology in Hall in Tirol, Austria. Don’s current research focuses on appropriate and innovative approaches to the use of evidence and economics to inform health policy based on sound principles of social justice, epistemology, and judgment and decision-making. He is currently Chair of an International Task Force that has developed consolidated health economic evaluation reporting standards (CHEERS) that is now endorsed by leading biomedical and health policy journals. Don is currently an Editorial Advisor for the biomedical journals, Value in Health and BMC Medicine. He also serves on the pan-Canadian Oncology Drug Review (pCODR) Expert Review Committee (pERC) and Ontario Committee to Evaluate Drugs. Don received both his BSc and MSc from the University of Alberta’s faculty of Pharmacy and Pharmaceutical Sciences.

Stéphanie Michaud, Ph.D. - CEO of BioCanRX

Stéphanie Michaud is President & CEO of BioCanRx, a federally funded Network of Centres Excellence with the goal of accelerating promising immunotherapies as mono or combination therapies to the clinic for the benefit of patients affected by cancer. Stéphanie brings significant management and partnership development experience having occupied executive positions within the Natural Sciences and Engineering Research Council (NSERC) and the Network of Centres of Excellence (NCE). Prior to joining BioCanRx in March 2016, she served for five years as Deputy Director responsible for policy, performance, management and delivery of the NCE program. Stéphanie is well versed in intellectual property law as a result of her work within the Canadian Intellectual Property Office and in the development of NSERC’s policy on intellectual property. Prior to joining the federal government, Stéphanie worked for a university spin-off company holding progressively senior scientific roles culminating in the management of the R&D efforts of the chemistry group. She holds a PhD from McGill University in Organic Chemistry.

Raphael Saginur, M.D. - Research Ethics Board Chair

Dr. Saginur is Chair of the Ottawa Health Science Network Research Ethics Board. An Infectious Disease physician at the Ottawa Hospital and Associate Professor of Medicine at the University of Ottawa, he graduated from Dartmouth College (A.B., 1969) and the Faculty of Medicine, McGill University (M.D.C.M., 1973). He trained in Internal Medicine, Infectious Diseases, and Medical Microbiology at McGill and Tufts Universities, the latter under Drs. John Bartlett and Sherwood Gorbach. He began his independent career at the Jewish General Hospital and McGill University in Montreal, moving to the Ottawa Civic Hospital (now The Ottawa Hospital) and the University of Ottawa in 1983. In the area of Infectious Diseases, he has been involved in clinical trials and laboratory studies mostly related to bacterial infections, with a particular interest in bacterial biofilms and surgical infections. He is Past President of the Canadian Foundation for Infectious Diseases and was President of the 26th International Congress of Chemotherapy in Toronto in 2009. He serves as Honorary Treasurer of the International Society of Chemotherapy and a Trustee of the Society. He has been actively involved in the public health-infectious diseases interface in areas such as emergency preparedness, travel medicine and antibiotic resistance and stewardship. Dr. Saginur was the founding President of the Canadian Association of Research Ethics Boards and led the initial development of the Ontario Cancer Research Ethics Board, of which he chairs the Governance Committee. He is a director of  Clinical Trials Ontario. He is actively involved in studies of research ethics. He has been honoured with Meritorious Membership of the International Society of Chemotherapy and the President’s Award of the Canadian Association of Research Ethics Boards.

Neil Stuart, Ph. D. - Healthcare Governance

Neil served for many years as a partner and practice leader in the health care consulting practices of Price Waterhouse, PricewaterhouseCoopers and then IBM. In 2009, he retired from IBM, forming his own consulting firm. He recently served on the boards of Cancer Care Ontario (Chair), The Change Foundation (Treasurer) the Ontario Hospital Association (Chair of the Governance Committee) and Toronto East General Hospital (Chair). Neil is an active board member of VON Canada (Chair) and Patients’ Canada (Founding Member and Director) and he is also a member of the Interim Steering Committee for the Ontario Centre of Excellence in Environmental Health.

 

He taught for several years in the University of Ottawa’s Masters of Health Administration program and is currently an adjunct professor at the University of Toronto in its Institute of Health Policy Management and Evaluation. He received his Ph.D. in health policy from Brandeis University where he was a fellow in the University’s Health Policy Center. He previously graduated from Carleton University and the University of Nottingham. Before entering university, Neil worked for a year as a volunteer on a World Health Organization anti-malaria program in the West Pacific.

Private Sector Members/Advisors

William “Bill” Dempster – CEO of 3Sixty Public Affairs and Advisor

As CEO of 3Sixty Public Affairs, Bill Dempster develops and implements high-impact government relations, policy and business strategies for clients in the health and life sciences sector.  Over the past decade, Bill has drawn on his deep business, legal and government experience to help clients find mutually beneficial solutions to complex regulatory, reimbursement and policy problems.  Bill and the rest of the 3Sixty Public Affairs team is responsible for providing cross-Canada health policy support and informatics to clients that include IMS Health, Canadian Blood Services and many major multinational innovative pharmaceutical firms.  He was previously a member of the federal relations and health policy team at Pfizer Canada, and his experience also includes working for a Member of Parliament, the United Nations and major Canadian law firms.  Bill is fluently bilingual, and has degrees in history (King’s College, University of Western Ontario), law (Queen’s University), and a Masters of Arts in international affairs (Norman Paterson School of International Affairs, Carleton University). He was called to the Bar of Ontario in 2002.

Ferg Mills - Health Economist

Ferg Mills is the Director of Strategic Consulting at Innomar Consulting, where his team is responsible for all aspects of economic analysis of health technologies. Ferg oversees a team of health economists who perform economic modeling for reimbursement submissions, pricing research, budget impact analyses and reimbursement strategy development. Ferg is deeply involved in the creation of all key submission documents to CDR and pCODR. In addition, Ferg and his team organize and run stakeholder insight projects, including advisory boards and interviews. He monitors the activities of CDR and pCODR closely, and is a regular contributor to ISPOR and other industry conferences.

 

Ferg holds a degree in economics from the University of Toronto and a Master’s degree in economic evaluation from the University of York in the UK. In addition, Ferg volunteers as the Vice-President of the Canadian Association for Healthcare Reimbursement, a professional association committed to providing educational and career development opportunities for market access professionals.

MolecularMatch

MolecularMatch (www.molecularmatch.com) was not possible before the advent of personalized medicine and the development of high-speed Internet aggregators (search engines). MolecularMatch combines these two technologies to instantly connect cancer patients and their caregivers to the very latest, most promising treatments—treatments based on the unique genetic structure of the disease. The list includes experimental medicines as well as those that have been FDA Approved. MolecularMatch does much more than present a list of medicines. It shows exactly where treatments are available and facilitates quick and easy requests for enrollment in clinical trials anywhere in the world.

Maria Perrotta – Pharma Executive

Maria is a results-driven, proficient professional with extensive technical and management expertise in regulatory affairs / policy, clinical research and continuing health education. During her 20+ year career in regulatory affairs in the pharmaceutical industry, her focus has been to advocate for approval of innovative drug therapies that are effective and enhance quality of life. She has worked to secure timely market authorizations for new drugs and new uses of medications for patients. Maria has extensive Canadian and international leadership experience in support of drug development, clinical trials, regulatory submissions/approvals, and post-market compliance obligations. She has developed trusted relationships with thought leaders in the field, scientific and medical experts, patient associations, Health Canada and Industry Associations. Maria has contributed to government initiatives aimed at the transformation of the federal regulatory and policy framework for drugs and medical devices.