Andrea Downing is a Community Data Organizer, and advocate for people who carry hereditary cancer mutations. In 2018, she discovered the SICGRL security vulnerability with Fred Trotter.
Andrea began her work in patient advocacy in 2013, as media spokesperson for one of the plaintiffs in Association of Molecular Pathology vs. Myriad Genetics. She served on the organizing team at Stanford Medicine X.
Eric Perakslis is a research, informatics, technology and R&D leader with more than 19 years of direct experience in information technology, informatics, research, healthcare, government regulation, biotechnology and pharmaceuticals discovery and development. He received his PhD in Chemical and Biochemical Engineering from Drexel University. Following a stint with ArQule, Inc., he joined the Johnson and Johnson companies, serving first as Director of Drug Discovery Global Information Solutions, NA at RWJ Pharmaceutical Research and progressing to Vice President R&D Informatics at Centocor and Member of the J&J Corporate Office of Science and Technology and ultimately to Sr Vice President, CIO at J&J Pharma R&D and Head of Translational Informatics at J&J Corporate Office of Science and Development. Perakslis became CIO and Chief Scientist (Informatics) at the FDA in 2011 before moving to HMS to serve as Executive Director at the Center for Biomedical Informatics.
Jill Holdren has a background in environmental science and public health/epidemiology and has experience managing state-wide public health programs, international consortiums, and non-profits, as well as thinking about and analyzing public health data. She is active as a patient and research advocate representing the hereditary breast and ovarian cancer community. She is focused on supporting the empowerment and autonomy of self-organized patient communities, understanding and communicating the critical role peer support plays in the healthcare continuum, and helping individual patients and patient communities work with research and healthcare institutions as full partners, rather than subjects.
Michael Mittelman, MBA, serves as Board Secretary for The Light Collective. As a data governance, privacy, and cybersecurity professional Mike with Sec+, AWS CCP, Azure CF certs, Mike provides both business and cybersecurity leadership to The Light Collective. Mike is also the founder and Board Chairman of American Living Organ Donor Fund, a patient rights group focused on helping living organ donors in their quest to become a donor. He is the former Patient Editor at the BMJ, and he currently sits on the International Patient Advisory Panel. Prior to that, he was the CEO and co-founder of PHmHealth, a digital health company focused on post-acute care and compliance. He also served as Director of Product Development at CareCentrix. His experience as a patient spans over three decades. He is a three-time kidney transplant recipient with other chronic conditions, including a rare disease. Mittelman was invited to testify/advocate before the FDA, and he serves as a PCORI Ambassador.
Valencia Robinson was diagnosed with triple negative breast cancer in October 2006. She was enjoying life as a high school English teacher and a busy mother of a three, four, five and eight year old. She continued teaching during chemotherapy and this ignited in her a passion to be a dedicated patient advocate for others as she saw many women dying after their diagnosis. Valencia is on the board of the Florida Breast Cancer Foundation, has been a peer reviewer for the Department of Defense Congressionally Directed Medical Research Program, is a member of the National Breast Cancer Coalition’s (NBCC) PCORI Project Advocate Steering Committee, is a Patient Advocate/Editor for the NIH's National Cancer Institute- sponsored Cancer Systems Biology Consortium (CSBC), is a graduate of NBCC’s Project LEAD, and much more.
After being diagnosed with breast cancer, Tiah Tomlin launched My Breast Years Ahead, an online support community created to help women who have been affected by any form of cancer in the Greater Atlanta area. She uses this group to connect women, share resources and provide support. She also co-founded My Style Matters, Inc., a nonprofit that provides supportive services and healthy lifestyle education for all cancer survivors and their caregivers. She is a graduate of the National Breast Cancer Coalition (NBCC) Project Lead program; an advocate for the Cancer Policy Action Team (CPAT) and Living Beyond Breast Cancer (LBBC); a Steering Committee member for Cancer Support Community and the Eye for Pharma IM-patient Summit ‘18; and much more.
Dr. Robert Cook-Deegan is a professor in the School for the Future of Innovation in Society, and with the Consortium for Science, Policy and Outcomes at Arizona State University. He founded and directed Duke’s Center for Genome Ethics, Law & Policy (2002-2012), and Duke-in-Washington through June 2016. Prior to Duke, he was with the National Academies of Science, Engineering and Medicine (1991-2002); National Center for Human Genome Research (1989-1990); and congressional Office of Technology Assessment (1982-1988). His research interests include science policy, health policy, biomedical research, cancer, and intellectual property. He is the author of The Gene Wars: Science, Politics, and the Human Genome and more than 250 other publications.
Christine Von Raesfeld
Few people with a cause walk the talk as boldly and graciously as Christine Von Raesfeld, founder and CEO of People with Empathy. Christine is a pillar of patient advocacy and allyship in the rare and chronic disease community. Through the lens of her lived experiences in healthcare, she has become a champion for patient voices, diversity and inclusion in clinical research, and equitable patient-sponsor partnerships.
Karl Surkan has been teaching in the Program in Women’s and Gender Studies at MIT for the past 12 years. His research interests include new media activism and online social movements, intersections of bioethics and science and technology studies, feminist media studies, technology studies, queer/trans politics and representation, reproductive technologies, and most recently wearable technologies and epatient communities and health activism.
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her standup comedy set. When she got a cancer diagnosis five days before Christmas, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. She writes, she speaks, she facilitates the Festivus Airing of Grievances in healthcare. Her favorite people to work with are those who want to fix the system, not serve the status quo.
Dr. Maya Rockeymoore Cummings
Dr. Maya Rockeymoore Cummings is President and CEO of Global Policy Solutions, a Washington, D.C.-based consulting firm dedicated to driving society toward inclusion. In this role, Maya serves as a strategic advisor to The Light Collective, an organization on a mission to represent collective rights, interests, and voices of patient communities in healthcare technology. She has previously served as the Director of Leadership for Healthy Communities, a national program office of the Robert Wood Johnson Foundation, Vice President of Research and Programs at the Congressional Black Caucus Foundation (CBCF), Senior Resident Scholar for Health and Income Security at the National Urban League, Chief Of Staff to Congressman Charles Rangel (D-NY), Professional Staff on the House Ways and Means Committee, and as a CBCF Legislative Fellow in the office of Congressman Melvin Watt (D-NC), and Assistant to the Director of the Marion County (IN) Health Department among other positions.
Karen Malkin Lazarovitz
Karen Malkin Lazarovitz is the Founder of BRCA Sisterhood, the largest and longest established support group for women with BRCA in the world with over 9,788 members. Starting as a small support group in 2009 for a group of friends who were struggling to find resources and support as they navigated decisions about BRCA, Karen has spent over 10 years leading this group with her fellow moderators. Since May 2018, Karen has done everything in her power to protect the BRCA Sisterhood from security and privacy issues impacting the BRCA Sisterhood, and has been a leading force to help fellow-admins in the BRCA Community to collectively organize efforts towards better privacy protections. She lives in Montreal with her family.
Lori is a board-certified psychiatrist. She served on Vanderbilt University clinical faculty for over 20 years. She has worked as a psychiatrist in academia and in the public and private sectors. She has been a co-administrator of the Facebook BRCA Sisterhood peer support group for over seven years. She believes the drift to a younger age in cancer onset with each subsequent generation is due to environmental factors, so her cancer prevention work and environmental work are intimately related. Lori is a BRCA2 mutation carrier and knew her status since 1997 when peer support was not readily available. She is devoted to helping others understand and navigate the implications of cancer-predisposing genetic mutations. She is a US master swimmer and sprint triathlete.
Alicia Staley is the Chief Patient Officer of Akari Health, a healthcare consulting group based in Boston, MA. She advises clients on how to use social media and social networks to build powerful relationships with patient communities. Ms. Staley is a three-time cancer survivor, first diagnosed with Hodgkin’s disease in her early 20s. She sits on the Tufts Medical Center Board of Governors and is the co-chair of the Tufts Patient and Family Advisory Council. She is also the co-founder of the 15,000 person strong #BCSM (breast cancer social media) Twitter Chat, a weekly breast cancer chat that has occurred every Monday since 2011.
Fred Trotter is co-founder of The Light Collective and CTO of CareSet Systems. He is a leading authority on the intersection of Health IT and CyberSecurity. He originally trained in cybersecurity as a contractor at the US AirForce Information Warfare Center. He was a founding member of the first Healthcare Industry CyberSecurity Task Force and co-authored the report on improving the cybersecurity of the healthcare industry which was presented to the US Congress in June 2017. Fred co-wrote the first ever book on Hacking Healthcare. In 2016 he won the Healthcare Data Liberator Award for his work opening significant healthcare data sets. As a Healthcare Data Journalist, Fred focuses on the interaction between using patient data safely to benefit patients, while respecting their privacy and safety.
For the last eight years, Shoshana Schwartz has dedicated her time to educating people about Hereditary Breast and Ovarian Cancer (HBOC). She is one of the administrators of the BRCA Sisterhood Facebook Support Group, which is the largest and most active global support group for women facing HBOC and Lynch Syndrome. She has been on the planning committee for the Canadian Cancer Society’s annual Breast Reconstruction Awareness (BRA) Day and is a volunteer for the Annie Parker Foundation. Shoshana lives in Toronto with her two pups.
After being diagnosed with advanced stage ovarian cancer in 2009, Kathleen Maxian learned a terrible truth: because she inherited a BRCA 1 gene mutation, she was pre-disposed to breast and ovarian cancer that, in fact, could have been detected through comprehensive genetic testing and prevented with prophylactic surgeries. In 2012, Maxian founded the Ovarian Cancer Project, with the mission to provide education on ovarian cancer symptoms and risk factors and to support women with the disease. She is a graduate of the National Breast Cancer Coalition’s premier science training program Project LEAD® Institute. Maxian serves as a Patient Advocate on numerous local and national boards and committees, is a sought after speaker, and has won many national and local awards for her work. Kathleen is an avid gardener and lives with her husband and dog in Upstate New York.
Sarah Jiang is a software engineer, design-nerd and creative based in Oakland, CA. She is currently working to make life simpler, more pleasant, and more productive as a Developer Tools Engineer at Slack.