Donald Akers, Jr. (Donnie) has been a volunteer for over 20 years with the Hemophilia Federation of America (HFA) (www.hemophiliafed.org.), a national non-profit organization that advocates for persons and families with bleeding disorders. He serves as the HFA general counsel (pro bono) and has served on its board of directors and executive committee. He is a passionate advocate for persons with chronic illness, speaking throughout the country on legal topics pertinent to patients and their families. He is a contributor to the Coalition for Hemophilia B and the Louisiana Hemophilia Foundation as well as a founding director of the National Ulcerative Colitis Alliance (www.nuca.life).

Akers is a retired assistant district attorney for the 16th Judicial District of Louisiana. As the designated elder abuse prosecutor, he was responsible for oversight of elder abuse, neglect, and financial exploitation cases and a speaker at conferences on these topics. He also served as the Family Services Division liaison to the Juvenile Court judges and prosecutors in the district. He holds a BA from the University of Louisiana at Lafayette and a JD from the Louisiana State University Law School. He resides in New Iberia, LA, where he limits his practice to elder, estate, and small business law.

Regina Butler has been the Hemophilia Treatment Center Nurse Coordinator at the Children’s Hospital of Philadelphia (CHOP) since its inception in 1973. She has been the Clinical Manager for the Division of Hematology since 1994 and the Director of the Hemophilia Treatment Centers in the Mid-Atlantic/Region III since 2009. 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.

Ms. Butler also has served 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.

Since the late 1970s, Ms. Butler has 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, on which she is currently co-chair. In 2015, Ms. Butler received the Lifetime Achievement Award from NHF. 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.

Courtney is a Pediatric Nurse Practitioner with the Hemophilia Treatment Center at St. Jude Affiliate Clinic at Novant Health Hemby Children’s Hospital in Charlotte, North Carolina. She has been caring for pediatric patients in Charlotte since 2002. Since 2013, she has focused solely on pediatric hematology patients. She enjoys educating patients, families, and healthcare providers regarding bleeding disorders across the US.

Courtney received her Bachelor of Science in Nursing from Queens University of Charlotte. She received her Master of Science in Nursing with a focus on Child Health Nursing from SUNY-Stony Brook. She has a hemostasis nursing certification as well.

Tracy unexpectedly became a member of the bleeding disorders community 18 years ago when her son was born and diagnosed with severe Hemophilia A – with no known family history. She served on the Virginia Hemophilia Foundation Board from 2005-2009 and on the Virginia Governor’s Hemophilia Advisory Board from 2006-2010. She joined the Hemophilia Federation of America Board in 2006 as a board member and then served as Secretary, 1st Vice President and Board Chair and currently serves on the Executive Committee as the Past Chair as well as the Chair of the Symposium Committee.

She works as a Trust and Estate Paralegal at Pender & Coward, P.C., Attorneys at Law. She received her Bachelor of Science in Governmental Administration from Christopher Newport University, Newport News, Virginia, 2000. In her spare time, she can usually be found at a baseball field. Her son will be attending Chowan University in the fall to play baseball, something they thought impossible at the time of his diagnosis.

Current Affiliation:
Operations Manager
Center for Bleeding and Clotting Disorders at M Health Fairview

Amy Marquez has worked with the Center for Bleeding and Clotting Disorders at M Health Fairview in Minneapolis, MN since 2010. She has served in a variety of roles to support the program and services for patients and families with bleeding disorders. In her current role as Operations Manager, Amy provides leadership and oversight to both the clinic and pharmacy programs and is an advocate for patients and the comprehensive care model delivered at HTCs. She provides information and education to payers on the care and complex needs of patients with bleeding disorders and has extensive knowledge of the 340B Federal Drug Discount Program. She holds a bachelor’s degree in Biochemistry, as well as a master’s degree in Health Care Innovation. She serves on multiple committees with the local hemophilia foundation chapter and participates in many community events.

Stephanie has been with Cascade Hemophilia Consortium since 1996, including 17 years serving as Associate Director. As Executive Director, she guides the daily operations of 30 full- and part-time staff. She has extensive knowledge of the 340B Federal Drug Discount Program. Stephanie also manages Cascade’s multi-million dollar regional funding program to 18 partnering Hemophilia Treatment Centers (HTCs) and 7 Hemophilia Foundations located in Michigan, Ohio and Indiana. In addition to the management of Cascade’s program, as a contract pharmacy, Stephanie and her staff manage 6 HTC 340B factor programs.

Stephanie feels very fortunate and thankful for the many long-time friendships made throughout her years at Cascade. “We have an exceptional community filled with many wonderful and dedicated people”.