Patient Insights Board Member
MarlaJan “MJ” Wexler is a registered nurse, patient, advocate and consultant. MJ was born with a complex congenital heart defect,tetralogy of Fallot, and had four open-heart surgeries by age six. Much of her childhood was spent in the hospital, and she often referred to it as her “second home.” At age 27, MJ was diagnosed with Systemic Lupus Erythematosus (SLE), and over time received overlapping diagnoses of Sjogren’s Syndrome, Behcet’s Disease, and Dermatomyositis. In addition, MJ is a two-time cancer survivor, undergoing treatment for early stage breast and cervical cancer. The members of the PIB call her the “Overachiever.”
MJ has been a registered nurse at The Children’s Hospital of Philadelphia (CHOP) for over 20 years, with 11 years experience working in pediatric cardiology. As a pediatric cardiology patient herself, she knew she could use her experiences to improve care for patients and families going through exactly what she went through. She is the Nurse Coordinator for the Transition Readiness and Awareness for Cardiac Kids (TRACK) program at CHOP, building the program to provide support and education for AYA cardiac patients and families to ensure a smooth transition to adult congenital cardiac care. She tailors her appointments to meet each patient’s specific needs and makes sure no patient gets “lost in transition.”
Her advocacy work started in 2012, when complications from lupus forced her to go on long-term disability. She started the blog Luck Fupus as a means to voice her frustrations of what the disease had taken from her and trying to navigate the healthcare system, with the hope other patients would not feel alone. After winning the WEGO Health Hilarious Health Activist Award in 2014, she was invited to speak at healthcare conferences, life science, and biotech companies to show how patients and industry must work together to improve outcomes for patients. MJ is a two-time Stanford MedicineX, PCORI, and Healthevoices e-Patient Scholar. She’s advocated on Capitol Hill, and has worked with several major pharmaceutical companies on developing clinical trials, and has been a keynote speaker at a number of conferences. She’s been featured on the TODAY Show, ABC News, Philadelphia Magazine, The Philadelphia Inquirer, Advance for Nurses, BuzzFeed, various podcasts and other publications.
MJ is one of the founding members of the Medidata Patient Insights Board to bring the patient voice to the forefront of clinical trial development.
marlajan@luckfupus.com
Instagram: @marlajan
Twitter: @marlajan