The FIRST Project in Review
Please join us as we discuss the work that was completed during this two year project focused on research for women. Hear from women who participated in the Community Based Research Network as part of FIRST and learn about the outcomes and implications for the female bleeding disorders community.
Aamina Iftikhar is a social worker at the local NFP health center. She earned her Master’s in Social work from the University of Illinois at Urbana Champaign and also has a Master’s degree in Sociology. Aamina specializes in working with people who have chronic health conditions. Aamina believes that there is not a single way to approach individuals with chronic health conditions and their social support needs. She always tries to tailor her support to the unique needs of families and their children.
Aamina has over 8 years of work/volunteer experience with a different local and national level organization that mainly works for mental and physical health. Through her work, she is committed to helping individuals dealing with mental health.
When Aamina is not at work or preoccupied with any volunteer task she loves to spend time with her family and boys, in her spare time she loves cooking, baking, traveling to fun places, and doing adventure sports.
Candace Lerman is an attorney, consultant, and author of the rare disease blog, RareCandace.com. She earned her Juris Doctorate with a concentration in Health Law at the Shepard Broad School of Law at Nova Southeastern University and a certificate in Healthcare Compliance from Seton Hall University School of Law. In addition, she holds a Bachelor’s and Master’s degree in International Affairs from Florida State University. Candace researched and repurposed a drug to put her rare blood disorder into remission twice! Inspired by her struggle of living with Immune Thrombocytopenia, she launched the ITP Patient Driven Research Initiative, which works with multiple stakeholders to improve treatments for the ITP community. She works closely with members of Congress on federal healthcare policy and can often be found on Capitol Hill.
Janet Chupka, RN, BSN
Janet Chupka is Research Director for Hemophilia Federation of America (HFA). She holds a Bachelor of Science in Nursing (BSN) degree from the University of Wisconsin-Milwaukee. She joined the staff at HFA in 2011 as part of the Programs team where she managed the FitFactor and Blood Sisterhood programs and became Programs Director in 2016. She has a special interest in women’s health and was the Principal Investigator of the PCORI funded FIRST project and is currently Key Personnel for the women’s initiative on HFA’s cooperative agreement with CDC. Janet and her family reside in Nashotah, Wisconsin.
My name is Julia Conde and I have hemophilia “A”. I’m a mother of two. My son also has hemophilia “A” and my daughter is a hemophilia carrier like myself. I dedicate much of my time to advocate for the hemophilia community and currently serve as a member of the Georgia Hemophilia Advisory Board. I’m also part of the advocacy group at my local hemophilia chapter In the state of Georgia where I reside.
Mabel Crescioni DrPH, JD, LLM
Mabel Crescioni is currently Director of Public Health and Outcomes Projects at the Hemophilia Federation of America (HFA), where she leads a patient-focused interdisciplinary team of researchers examining issues to the bleeding disorder community.
Mabel is also an Instructor at the Mel & Enid Zuckerman College of Public Health, where she teaches “Public Health Policy and Management” and a Professor of Practice at the James Rogers College of Law where she teaches “Clinical Research Ethics” both at the University of Arizona (UA). Prior to joining HFA, Mabel was the Director of the Electronic Patient-Reported Outcome (ePRO) Consortium and Assistant Director of the Patient-Reported Outcome (PRO) Consortium at the Critical Path Institute (C-Path). Following a graduate fellowship at the Centers for Disease Control, National Center for Health Statistics and a post-doctoral fellowship at the UA College of Medicine’s Department of Ophthalmology, where she worked on a longitudinal study of refractive error among Native American children validating PRO measures for children with spectacle correction, Mabel was an Assistant Professor at the UA College of Medicine. In addition, she has served as consultant to state and tribal health departments, federally qualified health centers, public health institutes and other health-related non-profit organizations.
After completing her Bachelors (BA) in Communications at Rutgers University, Mabel earned a Juris Doctor (JD) at Interamerican University of Puerto Rico, a Master of Laws (LLM) in Health Care Law at Saint Louis University, and a Doctor of Public Health (DrPH) at the UA. Prior to joining the UA, she also served as Health Policy Advisor to the Governor of Puerto Rico and working the Puerto Rico Senate.