We started as a grassroots group working to get patient support groups to a safer place. Now we are a team working to fundamentally change the relationship between vulnerable peer support groups and tech platforms where they convene.
Meet Our Team
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.
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.
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.
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.
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.
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.
Joi Morris is an attorney, a long-time BRCA advocate, and author of Positive Results, Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer. She is also co-founder of HeritX, a nonprofit whose mission is to invest in breakthrough research to discover therapies to prevent inherited cancers. Joi serves as an Advocate in Science and grant reviewer for Susan G. Komen for the Cure and is Past Vice President of FORCE, a national hereditary breast and ovarian cancer advocacy organization. She and her husband Matt have two children and live in Santa Monica, CA.
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.
Lisa Rezende is an Assistant Professor of Practice in the Department of Molecular and Cellular Biology at the University of Arizona, where she teaches introductory biology and genetics as well as science outreach and communication. Complementing her research and education experience, she has worked in science communication for over twenty years, with an emphasis on working with the hereditary cancer community since 2011 when, after discovering that she carries a deleterious mutation in the BRCA1 gene she began volunteering with FORCE: Facing Our Risk of Cancer Empowered. She served as Vice President of Education at FORCE from 2014-2017.
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.
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.
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.
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.
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. Tiah is dedicated to being a community change agent and national advocate by increasing awareness, speaking about prevention, calling people to take action with their health and giving people HOPE. 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.
Council of the Wise
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.
A former botanist and middle school teacher, Meg Doerr joined the genetic
counseling community in 2006. Meg led the clinical development and
implementation of Cleveland Clinic's family history and risk assessment tool before
joining the Governance team at Sage Bionetworks in 2015. At Sage, Meg’s efforts
have been concentrated on supporting innovative, participant-centric approaches in
open science. Her work has a strong focus on app-based research, including the ELSI
issues associated with informed consent, research participation, and data sharing for
secondary use in entirely remote, mobile platform based research studies including
for the All of Us Research Program.
Susannah Fox advises companies and organizations on how to navigate the intersection of health and technology. She is the former chief technology officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab that created opportunities for entrepreneurship across the HHS workforce. Previously she was the entrepreneur-in-residence at the Robert Wood Johnson Foundation and an associate director of the Internet Project at the Pew Research Center. Fox serves on the board of directors of Cambia Health Solutions and on advisory committees for Before Brands, Atlas of Caregiving, and the Lemelson Center for the Study of Invention and Innovation at Smithsonian Institution.
David Harlow is a health care attorney and consultant. His experience in both the public and private sectors over the past thirty years affords him a unique perspective on legal, policy and business issues facing the health care community. His award-winning blog, HealthBlawg: David Harlow’s Health Care Law Blog, is nationally recognized as a leading health care law and policy blog. David is recognized as a leading authority in the field by Healthcare IT News, Fierce Healthcare, Medscape and Health Data Management. He has taught Health Law and Business Ethics at The Heller School for Social Policy and Management at Brandeis University, in the MD/MBA Dual Degree Program offered with Tufts University School of Medicine. He is quoted and featured regularly in the legal, business, health care and general press in connection with health care legal and policy matters. He and his writing have been recognized with numerous awards.
Deven McGraw is the Chief Regulatory Officer for Ciitizen. Prior to joining Ciitizen, she directed U.S. health privacy and security policy through her roles as Deputy Director for Health Information Privacy at the HHS Office for Civil Rights (the office that oversees HIPAA policy and enforcement) and Chief Privacy Officer (Acting) of the Office of the National Coordinator for Health IT. Deven also advised PCORNet (the Patient Centered Outcomes Research Network), as well as the federal All of Us Research Initiative, on HIPAA and patient-donated data research initiatives.
Matt Might has been the Director of the Hugh Kaul Precision Medicine Institute at the University of Alabama at Birmingham (UAB) since 2017. At UAB, Matt is the Hugh Kaul Kaul Endowed Chair of Personalized Medicine, a Professor of Internal Medicine and a Professor of Computer Science. From 2016 to 2018, Matt was a Strategist in the Executive Office of the President in The White House. And, in 2015, Matt joined the faculty of the Department of Biomedical Informatics at the Harvard Medical School.
Matt is co-founder and Chief Scientific Officer of NGLY1.org, and he was a co-founder and Scientific Advisor to Pairnomix. Q State Biosciences acquired Pairnomix in October 2018 and Matt remains a Scientific Advisor.
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.
Carolina Rossini is the RightsCon Special Projects Manager at Access Now. Previously, she was a Policy Manager at Facebook, Vice President for International Policy and Strategy at Public Knowledge, International Intellectual Property Director at Electronic Frontier Foundation (EFF), and a Fellow at Harvard University’s Berkman Klein Center for Internet & Society. Before emigrating from Brazil, she worked as in-house counsel for Telefonica and at the Center for Technology and Society (CTS) at Fundação Getulio Vargas in Rio de Janeiro. She also founded in 2008 the Open Educational Resources (OER) Project Brazil, exploring OER methodologies and policies to empower students, teachers, and their community through communities of practice and policy and legal change. She was named a World Economic Forum Young Global Leader in 2016. Carolina serves as a Board member or advisor for non-profit initiatives around the world, including InternetLab (Brazil), Instituto EducaDigital (Brazil), and #Iamcode (Africa).
Lucia Savage is the Chief Privacy and Regulatory Officer at Omada Health. She has worked private, nonprofit and governmental sectors across the healthcare system, and in her previous role for the ONC advised numerous federal agencies (including the HHS, FTC and FCC) on issues ranging from HIPAA, human research, security and privacy technologies. She has worked as Senior Associate General Counsel at United Healthcare, where she was involved on strategies working with large data transactions related to everything from health information exchanges to academic research.
John Wilbanks is a data commons expert and advocate who has spent his career working to advance open content, open data, and open innovation systems. He is a senior fellow at FasterCures and chief commons officer at Sage Bionetworks. Wilbanks also serves as a senior fellow at the Ewing Marion Kauffman Foundation and as a senior advisor for big data to the National Coordination Office. Previously, Wilbanks worked as a legislative aide to Congressman Fortney ``Pete`` Stark, served as the first assistant director at the Berkman Center for Internet & Society, founded and led to acquisition bioinformatics company Incellico, Inc., and was vice president of science at Creative Commons. In February 2013, the U.S. government responded to a We the People petition spearheaded by Wilbanks and signed by 65,000 people, and announced a plan to open up taxpayer-funded research data and make it available for free.