Patient Group Representatives
Betsy de Parry
Betsy de Parry is a non-Hodgkin lymphoma survivor. Since her recovery in 2002, she has authored two books, written several essays and articles about the experience of cancer, produced and hosted reports for a PBS show, and produced and hosted webcasts about cancer-related issues. She has spoken to numerous organizations and is a frequent participant in awareness, educational and advocacy efforts. She has been featured on NPR and in The New York Times. Her story with cancer was the subject of a documentary which aired on PBS in 2010. Betsy lives and works with her husband in Ann Arbor, Michigan where she is vice president of marketing and sales for their homebuilding and land development company.
Josh A. Mailman
NorCal CarciNET Community
Josh A. Mailman holds a BA in Economics from the University of California at Los Angeles and an MBA in Marketing and Finance from the Anderson School of Management at UCLA. He is a Silicon Valley executive with over 20 years of success in the technology field. Mr. Mailman co – created eFax.com where he served as Vice President of Operations in addition to applying for and receiving several patents for his work on eFax’s technology. During his career Mr. Mailman has held executive level potions at Xerox, NBCi and Everyone.net. Mr. Mailman’s last start-up, ChatterEmail was sold to Palm in 2007. Since his diagnose in 2006 Mr. Mailman has focused his time and energy in the Non Profit community currently serving on the executive board of the Society for Integrative Oncology (SIO, www.integrativeonc.org), as president of the Northern California Carcinoid / Neuroendocrine Support Group (www.NorCalCarciNET.org), as a member of the NCI task force for Neuroendocrine Tumors and with Global Health Research Foundation where he also serves as Chief Technology Officer. His work with GHRF has taken him to Uganda and Bhutan where he has been able to use his IT knowledge to decrease the time and effort it takes to track diseases.
FORCE: Facing Our Risk Empowered Representative
Rosemary Ciotti is the consumer representative for FORCE, "Facing Our Risk Empowered". A not for profit organization involved in research education and consumer support surrounding genetic risks for Breast and Ovarian cancers such as BRCA 1/2. Rosemary Ciotti is a nurse practitioner and President of Accessible Living, Incorporated of Arlington, Virginia. The company provides expert guidance in Americans with Disabilities Act (ADA) compliance, as well as, working with communities to increase the utility of the built environment through the concepts of Universal Design. Additionally, Accessible Living, Inc. coordinates health care for persons living in the community with spinal cord injuries. Rosemary is a frequent invited participant to conferences both locally and internationally. Rosemary is also Executive Director of “Global Organization of Feminists with Disabilities” (GOFWD) (501 c 3).
Maria De León
Michael J. Fox Foundation
Maria De León is neurologist who completed her postgraduate movement disorder fellowship training at Baylor College of Medicine in 1999. Though she is currently on sabbatical, she spends her time involved in related activities as a well-respected and well-versed resource on Parkinson's disease (PD). She recently published her first book, Parkinson’s Diva: A Woman's Guide to Parkinson's Disease and she is currently working on her second book geared toward the Hispanic PD community. She is a consultant and frequent guest lecturer for the School of Social Work at Stephen F. Austin University; research advocate and alumni of the People with Parkinson's Advisory Committee for the Parkinson's Disease Foundation; part of the Women & PD initiative; and Texas assistant director for the Parkinson's Action Network. Maria established the www.defeatparkinsons.com organization along with one of her former Parkinson's patients, Howard A. "Woody" Wolfson. Since his passing, she now carries the full responsibility of running the organization, whose sole purpose is to provide free counseling to PD patients and their families in the East Texas region. She is also an active member of the Parkinson's Inside Out think tank, inaugurated in 2014. Concomitantly, she works vigorously to improve the lives of those with neurological disease at all levels by instructing pre-med students and health professionals. One of her biggest passions is fighting for discrepancies in medical health care, especially when it comes to treatment of women and minorities in the Parkinson's community, and she is a frequent lecturer for the Muhammad Ali Center of Parkinson's Hispanic outreach program. She is also currently involved in the science and Hispanic Subcommittees of the World Parkinson Congress of 2016. In 2013, she was a recipient of the Association of American Association of University Women Award for her work in the field of medicine. She runs two blogs at www.defeatparkinsons.com and www.parkinsonsdiva.org.
James A. Hendrix, PhD
James A. Hendrix is director, global science initiatives, at the Alzheimer's Association. As a member of the Medical and Scientific Relations Division, he provides leadership on specific domestic and international efforts focused on advancing the division's science agenda. A critical element of his role is to manage industry consortia such as the Alzheimer's Association Research Roundtable (AARR); lead the Global Biomarker Standardization Consortium; manage and direct future meeting efforts and output; and assist with the coordination of the $100 million dollar Imaging Dementia-Evidence for Amyloid Scanning (IDEAS) Study on the clinical usefulness of amyloid PET imaging. James received his Ph.D. and a postdoctoral fellowship from Colorado State University. Before joining the Alzheimer's Association, he was a pharmaceutical scientist with a focus on drug discovery for CNS diseases. He spent 18 years working at Sanofi-Aventis and predecessor companies, where he rose to level of senior director, U.S. site head for CNS research. He also spent two years working in the biotech industry with various companies, including Oligomerix, which is focused on tau for the treatment of Alzheimer's disease.
WomenHeart: The National Coalition for Women with Heart Disease
With over 30 years of non-profit management experience, Mary McGowan currently serves as Chief Executive Officer of WomenHeart: The National Coalition for Women with Heart Disease. In this capacity, she serves as the primary representative and spokesperson for this $5 million national organization with more than 35,000 members. Mary joined WomenHeart in September of 2010 as Chief Operating Officer to ensure the organization’s long-term growth and sustainability. She provides leadership and day-to-day oversight of WomenHeart’s main components, including fundraising, resource development, communications, marketing, programs and public policy. She created and implemented WomenHeart's National Hospital Alliance, a partnership with hospitals nationwide that seeks to ensure that women heart disease patients in every community have access to information, education and patient support services. Prior to joining WomenHeart, Mary served as Executive Director of the Allergy & Asthma Network Mothers of Asthmatics (AANMA), and she held various positions with the American Academy of Pediatrics (AAP) during her service of 18 years. Following the events of 9/11, she was project director on multiple emergency preparedness grants focusing on the needs of children. Mary earned a Masters Degree in Human Resources Development from George Washington University and a B.A. from Trinity University.
Colon Cancer Alliance
Dorothy McGrath is a Stage IV colon cancer survivor. When she was initially diagnosed in 2004, on her birthday, she wasn’t offered much hope for survival. Being a researcher at heart, having worked at PBS affiliates for over 26 years, she educated herself on the disease and signed up for a Stage II clinical trial. While researching her disease she joined the Colon Cancer Alliance and has been a mentor, advocate and speaker about this disease in order to raise awareness. Her passion for producing health related programs for her local PBS station escalated. Now that she is an insider on the disease, she has a true understanding of the challenges that patients face. She hopes that her productions are more informative to meet the patients, and their caregiver’s needs.
Men's Health Network
Brandon Leonard is Vice President of Strategic Initiatives at Men's Health Network (MHN), a Washington, D.C.-based national non-profit organization whose mission is to reach men and their families where they live, work, play, and pray with health awareness messages and tools, screening programs, educational materials, advocacy opportunities, and patient navigation. Brandon's current priorities at MHN include promoting patient access to appropriate care, educating policymakers on key men's health issues, and encouraging men of all ages to think proactively about their health. Brandon is a member of the American Public Health Association (APHA) and currently serves as Secretary and co-Policy Coordinator of the Men's Health Caucus within APHA. He also represents MHN on the Board of the National Council on Patient Information and Education (NCPIE). Prior to joining MHN, Brandon was an International Programs Officer with the Foundation for Sustainable Development, an international non-profit supporting grassroots organizations in Latin America, India, and East Africa. He previously served as a Policy and Planning Specialist on disability issues for the Office of the Governor of Virginia. Brandon received his master's degree in International Development Studies from the George Washington University and his bachelor's in Foreign Affairs and Spanish from the University of Virginia.
Lung Cancer Alliance
Elridge Proctor joined the Lung Cancer Alliance (LCA) in September 2016 as the Director of Health Policy. She has extensive experience with Congressional Relations and previously worked on Capitol Hill, handling a portfolio of women and children's health issues for a Member of the U.S. House of Representatives. She has also worked on a number of political campaigns and local volunteer boards, including one gubernatorial appointment by Maryland Gov. Martin O'Malley; with two consecutive terms to serve, as a member of the Trial Courts, Judicial Nominating Commission for District Fifteen-Charles County, Maryland. Prior to joining LCA, Elridge was Vice President of Public Policy at the Tourette Association of America. Elridge holds a master of arts degree in public administration, government management, and a bachelor of arts in political science.