Patient Advocacy Advisory Board

2016 Patient Advocacy Advisory Board Members

Members of the 2015-2016 SNMMI Patient Advocacy Advisory Board receive appreciation awards at the 2016 SNMMI Patient Education Day.

One of SNMMI’s main goals, as outlined in the 2010 Strategic Plan, is to engage the patient community and provide information about the uses of molecular imaging for improved diagnosis and treatment. SNMMI maintains a long-standing commitment to supporting patients, partnering with patient advocacy organizations on issues of mutual interest and priority, and providing educational programs for consumers to help them understand molecular imaging and the constructive role it can play in both diagnostic and therapeutic settings. Through this work, we recognized a growing need for the patient voice to be more formally incorporated into SNMMI’s programming and materials.  As such, we convened a Patient Advocacy Advisory Board to provide SNMMI staff, volunteer leaders, and members with the patient perspective with respect to molecular imaging and nuclear medicine matters.

One of the first initiatives of this group was to develop this web-site — a comprehensive and user-friendly public resource about molecular imaging and therapy and these disease areas that are using molecular imaging. The content of this website has been reviewed, and will continue to be updated, by experts in the fields of nuclear medicine, cardiology, neurology, and oncology.

Patient Group Representatives

Betsy de ParryBetsy de Parry 
Chairman
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 MailmanJosh A. Mailman
Past Chairman
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.

Rosemary CiottiRosemary Ciotti
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 LeonMaria 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 HendrixJames A. Hendrix, PhD
Alzheimer’s Association
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.

Mary McGowanMary McGowan
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.

Dorothy McGrathDorothy McGrath
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.

Brandon LeonardBrandon Leonard
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. 

Elridge ProctorElridge Proctor, MPA
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.

Stephen SchwartzStephen J. Schwartz
The Lymphoma Research Foundation
Stephen J. Schwartz is the Finance Manager at Lime Energy. He joined Lime Energy in 2010 and first served as a Sales Manager and then Program Director.  Stephen has more than 20 years of experience as a media sales and marketing professional in the digital, print and conference space in the United States and throughout the world. More than half of Stephen’s career has been in the science (STM) and chemical sectors, first at Chemical Week Associates and then Nature Publishing Group (NPG), a division of The Macmillan Group.  At NPG, Stephen directed all U.S. advertising print and digital sales for the weekly Nature, the world’s leading scientific journal as well as 17 other monthly titles including Nature Biotechnology, Nature Genetics as well as aiding in the launch of Nature Methods. Stephen is a member of the Lymphoma Research Foundation’s (LRF) Public Policy Committee and served as its 2010 New York City Lymphomathon Chair.  He is a cancer survivor, diagnosed in 1998 with Primary Mediastinal Large B-Cell non-Hodgkin lymphoma.  Stephen’s involvement with LRF was through the Cure for Lymphoma Foundation (CLF), which later merged with the Lymphoma Research Foundation of America (LRFA) to become the Lymphoma Research Foundation. Stephen is a graduate of Boston University’s School of Management.

Pam TraxelPam Traxel
American Cancer Society Cancer Action Network
Pam Traxel serves as the Vice President of Alliance Development and Philanthropy for ACS CAN, the advocacy affiliate of the America Cancer Society.  Pam is responsible for helping ACS CAN develop relationships with companies and individuals to help further the fight against cancer through dynamic partnerships, events, and forums.  Pam began her career with ACS CAN in 2007.  She has been integrally involved in helping to establish ACS CAN as a nationwide advocacy organization that influences and shapes public policy at all levels of government to impact our mission and to represent the voices of all cancer patients and their families. Prior to joining ACS CAN, Pam served in a variety of roles within the Democratic Party including the Democratic National Committee, the Democratic Governors Association, and the Democratic Legislative Campaign Committee.  She also spent almost a decade as a media consultant working with a variety of clients including Members of Congress and a number of associations like the National Rural Electric Cooperative Association and the Humane Society of the United States. Pam holds a Bachelor of Arts from the American University in International Studies and Political Science.

Theresa WickerhamTheresa Wickerham
ThyCa: Thyroid Cancer Survivors Association
Theresa Wickerham began volunteering for ThyCa: Thyroid Cancer Survivors’ Association in 2000. Following her original thyroid cancer diagnosis in 1975 she went 25 years without meeting anyone with thyroid cancer. She had a recurrence in 1998. During this more recent treatment experience she found some information about thyroid cancer on the Internet and also virtually met thyroid cancer survivors. This empowerment helped her realize that no one should go through a thyroid cancer diagnosis and journey alone and without the knowledge necessary to make good choices. She decided to get involved and make a difference. She founded the St. Louis Thyroid Cancer Survivors’ Support Group, organized several one-day regional workshops throughout the Midwest, and has taken on more and more involved planning and coordination roles in ThyCa’s International Thyroid Cancer Survivors’ Conferences including hosting the meeting in St. Louis, Missouri, in 2008 and 2015. In 2012 Theresa took the position of Program Coordinator for ThyCa. In this role she furthers education and support programs for all people dealing with a thyroid cancer diagnosis. She lives outside of St. Louis, Missouri, with her husband and enjoys spending time with their children and grandchildren.

 

SNMMI Outreach Committee Representatives

Giuseppe Esposito, MD 
SNMMI Outreach Co-Chair

Dr. Esposito is a Professor of Radiology and Chief of Nuclear Medicine and PET/CT at MedStar Georgetown University Medical Center in Washington, DC. He is a Past President of the Society of Nuclear Medicine and Molecular Imaging, Mid-Eastern Chapter, and has served as Chairman of Radiation Safety at Georgetown University Hospital and as a member of the Imaging Committee for the Alliance for Clinical Trials in Oncology. He holds a doctor of medicine from the Medical School University of Naples, Italy, and a Master of Business Administration in Health/Health Care Administration/Management from the Johns Hopkins University Carey Business School.

Henry VanBrocklin, PhD 
SNMMI Outreach Co-Chair

Dr. VanBrocklin received his Ph.D. in Radiopharmaceutical Chemistry from Washington University St. Louis under the mentorship of Prof. Michael Welch. He furthered the development of positron-labeled estrogens, progestins and androgens for tumor imaging. As a US Department of Energy Alexander Hollander Distinguished Postdoctoral Fellowship he continued his research on positron labeled steroids and fatty acids in the laboratory of Prof. John Katzenellenbogen at the University of Illinois. In 1992 Dr. VanBrocklin moved to Lawrence Berkeley National Laboratory where he was a Staff Scientist and Radiopharmaceutical Chemistry Group Leader in the Department of Functional Imaging until 2005. He is currently Professor of Radiology and Biomedical Imaging at the University of California San Francisco (UCSF) and Director of Radiopharmaceutical Research in the Center for Functional and Molecular Imaging.

SNMMI Leadership

Sally Schwarz, MS, RPh, BCNP, FAPhA
SNMMI President

Sally Schwarz is a Research Associate Professor and Director of PET Radiopharmaceutical Production at the Washington University School of Medicine in St. Louis, Missouri. She also serves as Co-Director of the Cyclotron Facility in Radiology Research. Her interest focuses on the regulatory issues involved in production and use of PET and SPECT radiopharmaceuticals in humans: Investigational New Drug Applications (INDs), Exploratory INDs, Expanded Access INDs and Radioactive Drug Research Applications. These applications include preparation of Chemistry Manufacturing Control (CMC), dosimetry, and toxicology sections. Additionally she has been involved in the design and installation of Washington University's Cyclotron Facility ISO Class 7 Nuclear Pharmacy.

Sara Johnson, MEd, CNMT 
President of Technologist Section

Sara Johnson is the Program Director of the Nuclear Medicine Technology and Computed Tomography programs at Hillsborough Community College in Tampa, Florida, where she also serves as the college’s Radiation Safety Officer.