Brenda Riske, MS, MBA, MPA has worked in hemophilia for the past 30 + years. She has worked as a nurse coordinator, research nurse and Regional Coordinator for the Mountain States. She continues as a consultant for the University of Colorado Hemophilia & Thrombosis Center following her retirement. She is committed to ensuring that care and programs for patients and staff in HTCs is continued.
Michael Craciunoiu has been with the National Hemophilia Foundation (NHF) since January of 2012. In his current role, he is responsible for establishing the vision and direction for NHF’s partnership with affiliated chapters. Prior to joining the NHF, Michael worked for the Indiana State Department of Education and notable nonprofit organizations whose missions focused on education, mental health, and disabilities. Michael has diverse working experiences performing coaching and performance management, program evaluation, and board development training. Michael has a master’s degree in Human Resource Education and is also a Professional Certified Coach (PCC) through the International Coaching Federation.
Maria joined the Hemophilia of Georgia team in 2000 and served until 2018. During her tenure at Hemophilia of Georgia she served as VP of Finance and Operations and Chief Executive Officer. She served on the Hemophilia Alliance Board 2010-2016 and Officer, 2011-2016. She also served on the board of the World Federation of Hemophilia USA, 2015-2018. Maria left Hemophilia of Georgia to return to a previous employer, Campbell-Stone Apartments, where she serves as its Chief Executive Officer.
Education:
Master of Science, Policy Studies, Nonprofit Management, Georgia State University, Atlanta, GA, 1996.
Bachelor of Science, Urban Studies, Georgia State University, Atlanta, GA, 1994.
Gerontology Certificate, Georgia State University, Atlanta, GA, 1994.
Grant Hiura has been a lifelong member of the bleeding disorders community. Diagnosed with severe hemophilia A at birth, he grew up in the San Francisco Bay Area, where he was heavily involved with the Hemophilia Foundation of Northern California and attended Camp Hemotion as both a camper and counselor. In 2013, he moved to NYC to work as an Education Specialist at the National Hemophilia Foundation, where he developed and managed educational programs such as the National Youth Leadership Institute and Steps for Living. Grant then worked as a Data Manager conducting research in respiratory epidemiology at Columbia University Irving Medical Center.
Grant received his BA in Molecular and Cell Biology at the University of California, Berkeley in 2013, and his MPH in Epidemiology from the Columbia University Mailman School of Public Health in 2018. In July 2021, Grant will begin medical school at the Loyola University Chicago Stritch School of Medicine. Grant also plays jazz piano and hopes to continue playing throughout medical school!
With 30 years of experience in the employee benefits, healthcare and pharmacy field, Jeff heads the Hemophilia Alliance payer relations department. Under his direction, the team works with public and private payers to promote and support member hemophilia treatment centers. Prior to joining the Hemophilia Alliance, Jeff was the Pharmacy Operations and Marketing Director for the Indiana Hemophilia & Thrombosis Center (IHTC), where he oversaw manufacturer and payer contracting, in addition to IHTC pharmacy program operations and marketing. He received his Bachelor’s Degree in Business Management from Bowling Green State University and his Master’s Degree in Business Administration from the University of Indianapolis. Jeff also received the Certified Employee Benefits Designation from the Wharton School of the University of Pennsylvania.
Sabrina is a Sr. Social Worker at Gulf States Hemophilia and Thrombophilia Center, University of Texas Health Science Center at Houston in Houston, Texas. She services patients throughout their life span diagnosed with bleeding disorders, provides educational programs for patients and their families as well as enjoys community outreach for the El Paso community.
Sabrina completed the TDIMA eCoach-the-Coach Quality Improvement program, serving as a pioneer ATHN coach. Sabrina previously served on the National Hemophilia Foundation (NHF) Social Work Working Group; was co-Chair of the NHF Ethics Working Group and is the recipient of the NHF Social Work Excellence Fellowship Award for 2018.
Current Affiliation:
Professor Emeritus
University of Cincinnati College of Medicine and
Cincinnati Children’s Hospital Medical Center
Cincinnati, OH 45229
Administrative Responsibilities:
Executive Board, Tri-State Bleeding Disorders Foundation
Executive Board, FAMOHIO
Dr. Gruppo holds an MD degree from Johns Hopkins Medical School in Baltimore, MD. He completed his pediatric training at the Cincinnati Children’s Hospital, Cincinnati, OH and the Harriet Lane Pediatric Fellowship Program at Johns Hopkins Medical School. He completed a Pediatric Hematology/Oncology fellowship at Cincinnati Children’s Hospital Medical Center, Cincinnati, OH. He has had a lengthy career, most notably Director of the Hemostasis and Thrombosis Program and the Special Hemostasis and Research Laboratory at Cincinnati Children’s Hospital since 1974 until his retirement in 2018. He served on the board of directors of the Hemophilia and Thrombosis Research Society, on the Medical Advisory Board for the U.S. Bureau of Maternal and Child Health, and on the Medical Advisory Board for Hemophilia for the Ohio Department of Health. He is currently an emeritus member of the American Society of Hematology, the International Society of Hemostasis and Thrombosis, and the Hemostasis and Thrombosis Research Society.
Dr. Gruppo’s research interests are on hemophilia, particularly prophylaxis and immune tolerance of inhibitors, on heritable disorders of thrombosis in children, endovascular thrombolysis in children, and atypical hemolytic uremic syndrome. He has over 80 book chapters and publications in peer-reviewed journals and was principal investigator for several federally sponsored and industry sponsored studies.
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 17 full and part-time staff and serves over 500 patients in her region. She has extensive knowledge of the 340B Federal Drug Discount Program. Stephanie also manages Cascade’s multi-million dollar funding award program to 18 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 holds a bachelor’s degree in health care administration from Concordia University. 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”.
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.
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.
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.
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.
Current Affiliation:
Associate professor of Pediatrics
Carver College of Medicine,
University of Iowa, Iowa City, IA 52241
Administrative Responsibilities:
Clinical Director of Pediatric hematology
Director, Iowa Hemostasis and thrombosis Program
Director, Newborn hemoglobinopathy Program
Dr. Sharathkumar holds an MBBS and an MD from Dr. Vaishampayan Memorial Government Medical College in Solapur, India, and an MS from the School of Public Health at the University of Michigan in Ann Arbor, MI. She has had a lengthy career, most notably as the Medical Director of Hemophilia and Thrombophilia as well as the Director of Pediatric Anticoagulation Service at the Ann and Robert H. Lurie Children’s Hospital in Chicago, IL. She is currently the Clinical Director of Pediatric Hematology/Oncology at the University of Iowa Children’s Hospital in Iowa City, IA. Dr. Sharathkumar has many society affiliations, amongst them are the American Society of Hematology, the Hemophilia and Thrombosis Research Society, the International Society of Thrombosis and Hemostasis, and the American Thrombosis and Hemostasis Network.
Her academic career is equally extensive. Over the last 15 years, Dr. Sharathkumar has pursued her clinical/translational research in haemostasis and thrombosis through network studies, both national and international. The breadth of her research ranges from health outcomes research to quality improvement projects related to bleeding and clotting disorders, and it has addressed key clinical issues in emerging issues such as cardiovascular diseases in the aging population of hemophilia in the US, phenotype/genotype correlation in von Willebrand’s Disease, risk factors of pediatric thrombosis, long-term complications of venous thrombosis, including newer assays/biomarkers of thrombogenesis. She has over 50 publications in peer-reviewed journals. She is institutional principal investigator for federally sponsored research studies and industry sponsored studies.
Joe Pugliese has been involved in the hemophilia community for the last 43 years. He started in 1978 as a sales representative in Chicago with the Armour Pharmaceutical Company. He held a variety of positions over the years including General Manager of Hemophilia Business Unit, and Vice President and General Manager of North America for Aventis Behring (successor company of Armour).
He joined Amerisource Bergen Specialty Group as President of the Specialty Pharmacy business in 2004 and departed in 2005 to pursue other interests in the hemophilia community.
He signed on as a consultant to the Hemophilia Alliance to start their group purchasing organization in 2006 and was named the President of the Hemophilia Alliance in 2008. The organization has grown from 5 members in 2007 to 107 members today. The board gave Joe the additional title of CEO in 2014 in recognition of his outstanding work in supporting the HTC network. Joe is looking forward to seeing this organization deliver its goal of achieving operational excellence in providing services for the hemophilia community.
Joe became Chairman of The Alliance Pharmacy in late 2010. The pharmacy, a 501c 3, is licensed as a pharmacy in all 50 states, has received ACHC accreditation, and has received its VAWD accreditation. The pharmacy manages several very successful trial programs for sophisticated pharmaceutical products like subcutaneous immune globulin and alpha one antitrypsin. Joe stepped down as Chair in 2017 but remains a very active Director.
Joe founded the Hemophilia Alliance Foundation in 2013 and has served on the boards of THSNA and WFH USA.
Joe has been married to Karen for 48 years. They have five children, two daughters-in-law, two son in-laws and 11 grandchildren.