Interstitial Cystitis Association (ICA) Board of Directors include people with interstitial cystitis (IC), family members, physicians, and professionals. The ICA Board guides strategic planning and organizational direction. Board members offer support for and spur interest in programs and services, and provide fiduciary oversight of organizational activities. This group of volunteers dedicates their time, expertise, and enthusiasm to ensuring ICA mission fulfillment.
Barbara Zarnikow, Co-Chair
An IC patient, public spokesperson and active advocate, Barb is an IC support group
leader for the Chicago area. To help others with IC, she also has shared her story in the local and national media. An active advocate and Capitol Hill walker, Barb regularly discusses the special needs of IC patients directly with members of Congress. A recently retired special education teacher/learning specialist, Barb received her degree from Eastern Illinois University.
Eric Zarnikow, MBA, Co-Chair
Eric Zarnkow is a financial executive who brings an appreciation for how the ICA helps families of IC patients. As the husband of an IC patient he became active in the association to help the ICA help other patients and family members. With more than 25 years experience in senior management positions, Eric, has an undergraduate degree from Iowa State University and a master’s of business administration from Drake University.
Rick Lufkin, Treasurer
Rick Lufkin is a serial entrepreneur in the life sciences specializing in early stage pharmaceutical, biotechnology, and medical device companies. He currently serves as CFO and director of a firm exploring and advancing real-time protein identification. As president of a specialty pharmaceutical company, he was involved with the early drug approval process for Elmiron® working closely with IC patients, physicians, and regulatory authorities. Rick is an MIT graduate with an MBA from the Wharton School, University of Pennsylvania. He and his wife live in New Jersey.
Gina M. Barbarotto, MS, MBA
Gina M. Barbarotto, MS, MBA, is an Associate Director in Patient & Professional Relations at Purdue Pharma L.P. She actively collaborates with numerous patient advocacy and healthcare professional groups around patient access and public policy issues and is a passionate advocate for people suffering with chronic illness. Gina uses her clinical background in medical technology and molecular genetics and experiences in marketing and pharmaceuticals to develop patient-centric resources and materials to improve patient-provider communications. She is inspired by her grandmother who suffered unnecessarily with painful comorbid conditions and did not have adequate resources to self-advocate and obtain quality care.
Nicole Cozean, PT, DPT is a physical therapist who specializes in treating interstitial cystitis, pelvic pain conditions, and pelvic floor disfunction. She earned her advanced board certification as a Women’s Clinical Specialist (WCS), making her one of the select few holding this credential. Seeking to help patients beyond the walls of her clinic, Nicole founded PelvicSanity to provide practical, positive information for patients with pelvic pain conditions like IC. Her book on interstitial cystitis, The Interstitial Cystitis Solution, is being published in October 2016. Nicole is also the Medical Director of the non-profit East Africa Partnership and the 2012 Chapman University Alumnae of the Year.
Jane Elsten, MD
Jane Elsten, MD, is an anesthesiologist who developed symptoms of IC after many years of clinical practice and was misdiagnosed for many years. After finally receiving appropriate treatment, though she had to cut short her rewarding career in medicine due to IC, Jane is now dedicated to networking within the medical community to increase awareness of and support for ICA. Her medical training and compassionate nature are assets to the ICA. Jane has two grown daughters and currently lives in McLean, VA.
Having more than 25 years of extensive involvement with health and risk communications across the U.S. Federal Government, Michael Greenwell is an expert in communication and public health who has experience across multiple sectors such as healthcare, public health, and environmental science. Michael is responsible for offering a wide range of services to health-related contracts, especially with the U.S. Department of Health and Human Services and the Centers for Disease Control and Prevention (CDC) where he served for 14 years as the communications director for two large centers. He serves on numerous boards, including the American Heart Association and the Sudden Cardiac Arrest Association, and has served as a senior consultant to the Arthritis Foundation, Chronic Fatigue and Immune Deficiency Syndrome Association, as well as ICA.
Jann Keenan, EdS
Jann Keenan, EdS, is a health literacy specialist and active community volunteer. Since 1995, she has served as president of the Keenan Group, Inc., a social marketing and multi-media design firm. Jann is also a strategic partner with the Institute for Healthcare Advancement. To promote health equity, Jann develops culturally relevant educational materials and curricula. She helps agencies adopt policies to create system-wide change as they work toward becoming health literate organizations. She received her EdS degree in instructional design from Indiana University, Bloomington, IN. An IC patient, Jann and her family call Maryland home.
Robert M. Moldwin, MD, FACS
With a Masters in early childhood education from Southern Connecticut State College in New Haven, Connecticut, JoEllen was one of the first HeadStart teachers hired by the New Haven School System. After moving to California, she continued to teach part-time and began her work as a volunteer. For more than 30 years, JoEllen has chaired and co-chaired several galas and served on many boards including Board of Directors of the Friends of UCSD Healthcare, Board of Trustees of The Reuben H. Fleet Science Center, San Diego State University Art Council, UCSD Healthcare’s Bannister Family House Board of Directors, and the Board of Directors for Chestnut Hill College. She currently lives in La Jolla, California with her husband Dr. C. Lowell Parsons who has been intimately involved in interstitial cystitis research and improving the quality of life for so many individuals for more than 30 years.
Irma Rodriguez, a patient and longtime supporter of the ICA. After a 25-year career in higher education, she has transitioned to a focus on furthering diversity in government and industry. Irma has also been a leader in professional, community, and national organizations dedicated to these issues and has been honored as a Kellogg Foundation Fellow and a Hispanic Leadership Fellow. A resident of Georgia, she is currently the manager of Diversity and Workplace Fairness with The Coca-Cola Company’s Corporate Global Office of Diversity and Workplace Fairness.
Joy H. Selak, PhD
Joy H. Selak, PhD, became too ill to work after being diagnosed with interstitial cystitis and other autoimmune and neurological conditions at 40. She found effective, supportive care and asked her physician to co-author a book with her about their shared experience. You Don’t LOOK Sick!: Living Well with Invisible Chronic Illness is now in its second edition. In 2010, Joy underwent a successful surgery and began to regain her health. After 20 years of illness, she is now working for an arts education non-profit and is committed to helping others build meaningful lives with long term illness.
With a career spanning over 30 years in non-profit agencies and government, Diane most recently was Vice President of Development for Planned Parenthood of Delaware. She retired from that position due to interstitial cystitis. Diane was also the Executive Director for the Mental Health Association in Delaware where she earned her certification as a fundraising executive (CFRE). She has extensive experience in cultivating donors, grant writing, operating a non-profit agency and board, engaging with the media, and in legislative advocacy. Diane received her MS degree in Counseling from Villanova University. She spends her winters in Naples, Florida and the remainder of the year in Pennsylvania and Martha’s Vineyard.
Tony J. Tyler
Being born and raised in Oklahoma City, Tony J. Tyler is married to his high school sweetheart and is the father of four children. After earning a bachelor’s degree in History from the University of Dallas in 1992, Tony began his career at Tyler Media—a media company consisting of 12 radio stations, five television stations, and an outdoor advertising company. Tony works alongside his brother Ty and his father Ralph.
Dan Vickery, MBA, PhD
Dan Vickery, MBA, PhD, has focused on urology and bladder pain for most of his career. He possesses extensive experience in pharmaceutical development and regulatory affairs, and was previously the head of worldwide commercial development for the therapeutic urology department of a major pharmaceutical company. Dan is currently the Chairman of a small biotechnology company seeking FDA approval for a new IC instillation therapy. Throughout his career, Dan has had the opportunity to meet many IC patients and their caregivers, and understands how devastating and debilitating the condition can be. Dan’s credentials and passion for overcoming IC make him an invaluable addition to the ICA Board of Directors.
Revised Thursday, January 7th, 2016