Terry Jo V. Bichell, PhD, MPH
Rare Action Network
Ambassador for Tennessee,
NORD; Angelman Syndrome
Terry Jo Bichell worked as a documentary filmmaker in the early days of videotape, then became a public health nurse-midwife after filming a difficult birth in West Africa. When her youngest child, Lou, was diagnosed with Angelman syndrome, she switched from midwifery to clinical research. Finally, she went back to school to earn a PhD in neuroscience from Vanderbilt University in an effort to find treatments for her son. She studied gene-environment interactions in Huntington disease as well as circadian aspects of Angelman syndrome and was a columnist for HDBuzz. After graduating, she was the Founding Director of the Angelman Biomarkers and Outcome Measures Alliance until 2018. Dr. Bichell founded a new non-profit in 2019, COMBINEDBrain (Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders), to assist other rare and ultra-rare non-verbal neurogenetic disorders with clinical trial preparations.
Dina Marie Inverso
Director, US Commercial Operations, Reimbursement, Patient Engagement CSL Behring
Dina Marie Inverso is the Head of Reimbursement and Patient Engagement Strategies at CSL Behring. In this role, she is currently focused on leading a strategic center of excellence which includes programs and support that ensure access and education to CSL therapies for rare and orphan diseases.
Dina has more than 20 years of diverse healthcare experience. Prior to joining CSL Behring, Dina served as US Franchise Leader for Merck’s Oncology Business, additional roles included positions as Senior Director of Oncology Marketing, and pivotal roles in Economic Affairs and Reimbursement.
Dina holds an MBA in Marketing from the Haub School of Business ,a B.S. in Microbiology, and worked as clinical cytogeneticist. She has extensive experience in Patient Assistance, Reimbursement, Market Access, Marketing and Commercialization Strategies.
Director, Communications U.S. Pain Foundation
Emily Lemiska lives with pain due to a rare congenital defect known as Klippel-Feil syndrome. She first became involved with U.S. Pain Foundation as an INvisible Project magazine featured participant in 2015 and officially joined the staff in 2016 as Associate Director of State Advocacy. In 2017, she moved into a new role as Director of Communications. In this position, she coordinates the organization's newsletter, social media, and web content, as well as its educational materials and PEP Talk webinar series. She also has spoken out about patient issues at key forums, including the Department of Health and Human Services, the Food & Drug Administration, the Connecticut State House, and others
Prior to U.S. Pain, Emily worked as a freelance writer and editor and earlier on, in Public Affairs and Communications at Massachusetts General Hospital, where she focused on quality and safety, community health, and health care disparities. Outside of her current efforts with U.S. Pain, Emily serves as associate director of a small patient support organization, Klippel-Feil Syndrome Freedom. She sometimes writes essays about managing her health, and has been published in Pain Pathways, Folks magazine, Blast magazine, and Bustle.
Senior Vice President, CFO and Treasurer Capital Blue Cross
Harvey Littman leads Capital BlueCross’ finance, actuarial, corporate tax, and sourcing departments. With more than 30 years of experience, he has held executive leadership positions at national and regional health plans including Scott & White Health Plan, UnitedHealthcare, and Anthem Blue Cross and Blue Shield. His areas of expertise include financial management, acquisitions, and healthcare analytics. Harvey serves as treasurer of the board of directors for Hamilton Health in Harrisburg and on the executive leadership team for the Heart Ball for the American Heart Association of Greater Harrisburg.
Steven Peskin, MD, MBA, FACP
Executive Medical Director, Population Health Horizon Blue Cross Blue Shield of New Jersey
Steven R. Peskin, MD is the Executive Medical Director, Population Health at Horizon Blue Cross Blue Shield of New Jersey. His expertise encompasses physician leadership, population health management, clinical and operational performance improvement in health care, medical education and scientific communications. He has been one of the driving forces for the creation of and successful maturation of value based models in New Jersey.
Dr. Peskin is an Associate Clinical Professor in the Department of Medicine at Rutgers Robert Wood Johnson Medical School. He is a clinical preceptor at The Eric B, Chandler Clinic for interns and residents in Internal Medicine. Dr. Peskin assists with the Population Health and business of medicine training for the Rutgers RWJ Internal Medicine physicians in training.
Dr. Peskin received his bachelor’s degree from The University of North Carolina Chapel Hill and medical degree from Emory University School of Medicine. He completed residency at Saint Elizabeth’s Medical Center in Boston and holds an MBA from the Sloan School of Management at Massachusetts Institute of Technology.
Michele Rhee was diagnosed with thyroid cancer at 20 while a junior in college, which led to the diagnosis of a life-threatening rare disease the next year. Unlike many others diagnosed with cancer or a life-threatening rare disease, Michele was lucky enough to have effective treatments and chose to dedicate her career to helping other patients who did not have the same luck. At the time, she had never heard of patient advocacy, but today, she is a patient advocate by profession and passion. Michele is Head of Patient Affairs at Enzyvant, a founding Board member of Costs of Care, and a Sambassador for the Samfund.
Marla Jan Wexler, BSN, RN, CPN
Marla Wexler is 35 years old, was born with a complex congenital heart defect, and had 4 open-heart surgeries by the time she was 6. She went from pediatric cardiac ICU patient to pediatric cardiac ICU nurse until being diagnosed with systemic lupus erythematous (lupus). Due to complications from the disease, she was forced to put her nursing career on hold. Since 2008, Marla has been diagnosed with lupus and multiple rare autoimmune diseases, cervical cancer, and lobular carcinoma in situ.
She’s the creator and author of the blog Luck Fupus (www.luckfupus.com) which she writes about the day-to-day and long-term struggles of living with multiple chronic illnesses. She’s known for her humorous, keep-it-real style of writing. Her blog was used as a platform to help her become a patient leader and influencer, and Marla now travels the country attending healthcare conferences, speaking publicly sharing her story, educating and advocating for patients across the globe.