Amy Shapiro, MD, is Medical Director of the Indiana Hemophilia & Thrombosis Center in Indianapolis and Adjunct Professor of Pediatrics at Michigan State University in East Lansing. After receiving her medical training at New York University School of Medicine in New York City, Dr. Shapiro completed her pediatric internship, residency, and fellowship in pediatric hematology/oncology at the University of Colorado Health Sciences Center in Denver.
Author or co-author of more than 200 journal articles, abstracts, and textbook chapters, Dr. Shapiro is active in improving treatment for people with bleeding disorders. She has been appointed to the National Hemophilia Foundation’s Medical and Scientific Advisory Council and has served on several boards for National Institutes of Health in Data Safety Monitoring and Clinical Trial Review. She has served as Co-Chairman of the Board of Directors for the American Thrombosis and Hemostasis Network and remains active on various ATHN committees.
Dr. Shapiro has been honored with the National Hemophilia Foundation Physician of the Year Award as well as the Distinguished Hoosier Award in Indiana. She is a member of numerous professional societies including the Hemostasis & Thrombosis Research Society, the International Society on Thrombosis and Haemostasis, the American Society of Hematology, the National Hemophilia Foundation, and the World Federation of Hemophilia.
Angelina Wang has been working at the National Hemophilia Foundation since 1993. Ms. Wang currently directs HANDI, NHF’s information services center, which provides the community and general public with educational resources and referrals related to bleeding disorders.
In addition, Ms. Wang directs NHF’s research grants and fellowship programs and is responsible for securing CME and CEU accreditation for NHF’s Annual Meetings and other provider education programs. She has experience developing new educational publications and edits content for a variety of NHF communication vehicles (including HemAware magazine, NHF’s notes, NHF’s NewsBriefs and the www.hemophilia.org website). Over the years, Ms. Wang has also represented NHF at regional, national and international conferences.
Cindy Bailey is a past Assistant Professor of Clinical Practice in the Dept. of Biokinesiology & Physical Therapy at the University of Southern California (USC) & is currently Clinical Faculty at Mount Saint Mary’s Physical Therapy Doctorate program. She is the Director of P.T./O.T. at Los Angeles Orthopaedic Institute for Children (OIC) and the Physical Therapist for the Orthopaedic Hemophilia Treatment Center. She is also an administrator for OIC Sports Care Outreach program. Dr. Bailey’s post graduate work has included an Advanced Residency at Kaiser West Los Angeles (KWLA) in Manual Orthopaedic Physical Therapy & a Fellowship at USC Keck School of Medicine in Medical Education Teaching & Learning. Since 1997, Dr. Bailey has worked and traveled with the USC ice hockey team as their Certified Athletic Trainer and EMT & has been invited as coverage for Olympics, Pan Am and Goodwill games as well as World Championships. Dr. Bailey has been a world leader in Kinesiology Taping education and practice. Her new interest and research area is in Musculoskeletal Ultrasound with orthopedics and the hemophilic patients.
Jim Munn received his BS, MS and BSN degrees from the University of Michigan. Mr. Munn has served as Chair, Vice-Chair, and Regional Representative for the National Hemophilia Foundation’s (NHF) Nurse Working Group, and as the U.S. Representative, Vice-Chair and Chair for the World Federation of Hemophilia (WFH) Nursing Committee. Mr. Munn is treasurer of the International Society on Thrombosis and Haemostasis (ISTH) Nurses Forum, which develops program content and arranges speakers for the biannual ISTH meeting. Mr. Munn has presented lectures and authored publications related to bleeding disorders care.
Dr. Stoffman is a Pediatric Hematologist/Oncologist at the Children’s Hospital of Winnipeg and CancerCare Manitoba, and Assistant Professor in the Department of Child Health, Max Rady College of Medicine at the University of Manitoba in Winnipeg, Manitoba, Canada. Since June, 2014, he has served as the Program Director for the subspecialty education and fellowship program in Pediatric Hematology/Oncology. His particular clinical interests are in coagulation disorders and hemoglobinopathies in children.
Dr. Stoffman has been a co-director of the pediatric hemophilia program in Manitoba since 2005, and in 2013 became the first Medical Director of the Winnipeg Regional Health Authority Manitoba Bleeding Disorders program. He has been an active member of the Association of Hemophilia Clinic Directors of Canada since 2006, serving on the Board of Directors since 2007 and chairing their Privacy Committee from 2010-14. After four years as Treasurer, he was appointed as President of the Association in May, 2014, recently completing his two-year term. At the conclusion of his term as President of AHCDC, he was named Medical Liaison to the Canadian Hemophilia Society. He also serves on the Board of Directors of the Canadian Pediatric Thrombosis and Hemostasis Network.
Since 2009, Dr. Stoffman has worked with the World Federation of Hemophilia (WFH) Twinning Program. From 2010-13, he led the twinning with the Hemophilia Society [Delhi], providing education, training, and support for their bleeding disorders program. After the conclusion of the Delhi partnership, he provided support and education to the Guwahati Medical Collage and Hospital (Assam, India) in 2014. At the WFH General Congress in May, 2014, he was appointed to the WFH Twinning Committee, and he is also a member of the International Committee of the Canadian Hemophilia Society.
Jennifer Maahs is a Pediatric Nurse Practitioner at the Indiana Hemophilia & Thrombosis Center (IHTC) in Indianapolis, Indiana. She received her Bachelors of Science in nursing in 1988 from The Ohio State University and her Master’s degree in 1996 from Indiana University. Ms. Maahs entered hemophilia care in 1994 as a Hemophilia Treatment Nurse at the Indiana Hemophilia Comprehensive Center and became the Hemophilia Nurse Practitioner in 1996. Ms. Maahs specializes in program planning, education, and patient care in the areas of hemophilia, hemostasis, and thrombosis.
Ms. Maahs is currently on the Nursing Committee of the International Society on Thrombosis and Haemostasis (ISTH). She is also on the Speaker’s Bureau of Baxalta US, Inc. and Novo Nordisk and the Nursing Advisory Board of Biogen Idec. Ms. Maahs served as nursing liaison to the Medical and Scientific Advisory Council (MASAC) of the National Hemophilia Foundation and Chairman of NHF’s Nursing Working Group from 2002 to 2005. In 2003, she was named NHF’s “Nurse of the Year” and received an Award of Excellence for her work in hemophilia care.
Karen Droze, MS, is the Director of the National Hemophilia Program Coordinating Center (NHPCC) at the American Thrombosis and Hemostasis Network (ATHN). She has over 25 years of experience in both not-for-profit and for-profit settings, thirteen of which she served as the coordinator in the Southeast Region of the National Hemophilia Network. Ms. Droze completed her undergraduate degree in Communicative Disorders from the University of Central Florida and holds a Master of Science degree in Audiology/Deaf Education from the University of South Florida. Ms. Droze's areas of expertise include continuous quality improvement, program management and assessment, grant proposals, data collection, advocacy and resource development.
Lydia Johnson, RN, BSN is the pediatric Clinical Nurse Coordinator for the John Bouhasin Center for Children with Bleeding Disorders located at Cardinal Glennon Children's Hospital in St. Louis Missouri. Ms. Johnson has been working with children with chronic and genetic health conditions for the past 25 years. She joined the Bleeding Disorders team in 2011. Since joining this team, she has served as the Head Nurse for the annual summer camp (Camp Notaclotamongus), the vice chair of the Medical Advisory Board for the local chapter of the National Hemophilia Foundation (NHF), member of the family education weekend planning committee, and member of the Missouri Advocacy committee. She has been involved with NHF education regarding girls and women with bleeding disorders. She worked with Ob-Gyn providers in St. Louis to develop and offer a quarterly comprehensive clinic for girls and young women at the HTC. She has been a member of the NHF Nurses Working Group since 2014 serving at the Great Plains Regional representative and Committee Member at Large. She has presented at several local and state level meetings regarding Bleeding Disorders. Ms. Johnson is currently developing a project addressing the education of EMS personnel in the care of people with bleeding disorders.
Mark Reding, M.D. is Director of the Center for Bleeding and Clotting Disorders at University of Minnesota Medical Center in Minneapolis and an Associate Professor of Medicine in the Division of Hematology, Oncology, and Transplantation at the University of Minnesota. Dr. Reding received his Bachelor of Science degree in microbiology and biology at South Dakota State University in Brookings. He earned a Doctor of Medicine degree at the University of Minnesota Medical School, where he also completed internal medicine residency and hematology/oncology fellowship training.
Dr. Reding’s clinical interest is the treatment of non-malignant blood diseases with particular emphasis on disorders of hemostasis and thrombosis, including hemophilia. His laboratory based research efforts have focused on the immune response to FVIII and the cellular mechanisms involved in the synthesis of FVIII inhibitors. He has also served as the local principal investigator for a number of multicenter clinical trials. Dr. Reding considers teaching to be the most important and rewarding aspect of his work, and he twice has been awarded the Outstanding Clinical Mentor Award from his division at the Medical School. In addition to teaching responsibilities at the University, he frequently speaks at educational programs for physicians and other health care professionals. Dr. Reding is a member of American Society of Hematology, Hemostasis and Thrombosis Research Society (HTRS), and International Society on Thrombosis and Haemostasis.
Dr. Recht is the director of the Hemophilia Center and professor of pediatrics and medicine at Oregon Health & Science University. He also is regional director of the Mountain States Hemophilia Network, leading the federally funded treatment centers in the states of Alaska, Arizona, Colorado, Idaho, Montana, New Mexico, Oregon, Utah, Washington, and Wyoming. He received his undergraduate degree in Psychology from the University of Wisconsin-Madison and his medical degree and PhD in immunology, also from the University of Wisconsin-Madison. After completing his residency in pediatrics and fellowship in pediatric hematology-oncology, Dr. Recht became the director of the Hemophilia Center at Phoenix Children’s Hospital. Since coming to Doernbecher Children’s Hospital at Oregon Health & Science University, Dr. Recht has been the Section Head of Pediatric Hematology within the Division of Pediatric Hematology-Oncology at Doernbecher Children’s Hospital/OHSU. In addition to being a member of the Partners Advisory Board, Dr. Recht is chair of the board of the American Thrombosis and Hemostasis Network.
Neil Frick received his Masters of Science in 1993 from St. John’s University in Jamaica, NY, in Rehabilitation Counseling. He is responsible for the overall strategic and operational leadership of the National Hemophilia Foundation’s (NHF) research programs and HANDI Information Resource Center including oversight of the processes of material development, update and distribution channels. He also supports the work of NHF’s Medical and Scientific Advisory Council and supervises NHF’s continuing education program serving coagulation disorders treatment professionals. This includes the development of publications, pre-conference symposium and program tracks at NHF’s Annual Meeting.
Mr. Frick also serves as managing editor of several educational publications for the bleeding disorders community which include "Caring for Your Child with Hemophilia," "Playing It Safe: Bleeding Disorders, Sports and Exercise," "The Child with a Bleeding Disorder: First Aid for School Personnel," "Guidelines for Finding Childcare" and "von Willebrand Disease: Just the FAQs." Finally, Mr. Frick is a contributing editor to NHF’s print and online magazine, "HemAware."
Regina Butler has been the Hemophilia Nurse Coordinator at the Children’s Hospital of Philadelphia (CHOP) since 1973 and the Director of the Hemophilia Treatment Centers in the Mid-Atlantic Region III since 2008. Ms. Butler also has served since 2000 as a consultant to the Centers for Disease Control and Prevention (CDC) to assist in development of educational materials and curricula on bleeding disorders for health care providers and patients and families. Additionally, in 2014, Ms. Butler became chair of the Needs Assessment Committee of the National Hemophilia Coordinator Center. In her role at CHOP, Ms. Butler coordinates the care of over 450 children with bleeding disorders in collaboration with a large, multi-disciplinary team.
Since the late 1970s, Ms. Butler also has also had significant involvement in professional committees and organizations within the hemophilia community, including the National Hemophilia Foundation’s (NHF) Nursing Committee, where she served as a founding member and Chairperson, NHF’s Medical and Scientific Advisory Council, and Maternal and Child Health Bureau Executive Committee. She is the former U.S. representative to the World Federation of Hemophilia (WFH) Nursing Committee and served as a member of its Communications Committee. Ms. Butler has published numerous papers on hemophilia, patient/family education, nursing education, and nursing perspectives on hemophilia care and HIV risk reduction. Ms. Butler has presented locally, nationally and internationally on a variety of topics in hemophilia care.
Robert Louden is a licensed clinical social worker (LCSW) and has been working at the Indiana Hemophilia & Thrombosis Center, Inc. (IHTC) in Indianapolis, Indiana since 2014. He has been working as a social worker since 2000 and received his Masters of Social Work in 2007 from Indiana University. Mr. Louden has experience working with both individuals and families, with a broad range of medical diagnoses, with an emphasis on the chronically ill, and those suffering from addictions and mental health issues. In his role at the IHTC, Mr. Louden assesses psychosocial needs and develops a plan of care in conjunction with the multi-disciplinary team for patients with bleeding disorders and other diagnoses, and their families. He applies and maintains a working knowledge of theories and treatments used to treat pediatric and adult chronically ill patients who experience mental health and/or substance abuse including crisis intervention and brief, solution-focused therapy. Mr. Louden also provides assistance with coordination of resources at the local and national levels as well as health insurance issues and concerns.
Susan Lattimore is the Regional Coordinator for the Mountain States Hemophilia Network and the research program director at the Hemophilia Center at Oregon Health & Science University. Ms. Lattimore has been working in hemophilia since 2010 after transitioning from leading research efforts at Vanderbilt University and the National Institutes of Health in stroke and trauma. Ms. Lattimore has contributed to over 150 research studies in bleeding and clotting disorders and stroke.
Susan Fenters Lerch is the Executive Director of Hemophilia Foundation of Michigan (HFM), a position to which she was appointed in June 2014. In addition to providing Michigan statewide patient educational programming and advocacy services, Ms. Lerch serves as the Great Lakes and Region V-East Hemophilia Treatment Centers (HTCs) Regional Director for 19 hospital and/or university based HTCs in Michigan, Indiana, and Ohio. Ms. Lerch is an accomplished leader who has served in the non-profit sector for more than three decades.
Susan Cutter is a licensed clinical social worker with a Master’s Degree in Social Work, a Master’s Degree in Public Administration and a Certificate in Psychodynamic Psychotherapy. Working as a social worker with the hemophilia population since 1989, she provides a full complement of social work services to individuals and families with bleeding disorders. She participates in hemophilia outreach efforts, including providing social work services to adolescents in transition in an underserved area.
Ms. Cutter has been a professional trainer in the bleeding disorder community in areas such as strengthening patient/provider communications, team building, and conflict resolution. She has been involved in developing a wide range of educational programs, nationally and internationally, focusing on psychosocial issues for patients with hemophilia and their families. Ms. Cutter received the “Outstanding Social Work Award” in 1995 from the National Hemophilia Foundation.