Thanks to the hard work and dedication of PNH patient Marlena Connor, New York City’s annual PNH Walk/March for Marrow has been an outstanding event for years. It not only brings patients, families and friends together for fun and fundraising – it includes a valuable education component by featuring a top PNH expert speaker at its pre-walk breakfast.
Marlena’s efforts have made a major contribution to PNH awareness and PNH research, which is focused on finding a cure.
Neil Horikoshi is a past chairman of the AAMDSIF Board of Directors and led its transformation to a strategic and policy making governance board. He is an Advisory Council member for both the Asian American Justice Center (AAJC) and the Asian Pacific American Institute for Congressional Studies (APAICS). He also serves on the a Board of Governors for the Go for Broke National Education Center and as an Advisory Council member for the Bill & Melinda Gates Foundation’s Gates Millennium Scholars Program.
Neil Horikoshi joined the Asian & Pacific Islander American Scholarship Fund (APIASF) in 2008 as the president and executive director after a distinguished 30-year career at International Business Machines Corporation (IBM), where he served in a variety of legal and executive management positions in the United States and Asia Pacific.
Since 1997, Tony has served on the AAMDSIF Board of Directors, bringing his professional expertise from the financial and investment world to the organization. But it was his personal experience as the parent of a young daughter with aplastic anemia that cemented Tony’s and his wife, Briget’s, commitment to helping other patients and families. Rachel, now an adult, was successfully treated with ATG and has been medication free for over a decade. Tony’s involvement has grown from his early work with the AAMDSIF’s Earl J. Goldberg Chapter in Chicago in the 1990s, where his family lived when Rachel was diagnosed. He now serves as Treasurer on AAMDSIF’s Board. Tony’s leadership has contributed to the long-term financial strength of the organization and allowed for its growth to serve more patients and families with more programs. He and Briget have also matched his service to the organization with their philanthropic leadership, giving generously over the years. Now living in Westport, CT, AAMDSIF is pleased to recognize Tony Sanfilippo for his years of service in this way.
Dr. Groft has been focusing attention on rare and orphan diseases like bone marrow failure. His leadership and vision have brought neglected and little known diseases into the spotlight to help garner clinical attention and financial resources for research. All told, 25 to 30 million people in the United States have a rare disease, millions more are caring for a loved one with a rare disease and millions more as employers and friends are impacted. Highlights of his work include time at the Food and Drug Administration in the Office of Orphan Products Development and at the Department of Health and Human Services as Executive Director of the National Commission on Orphan Diseases.
Ruth and Neil are recognized for their development and operation of MarrowForums.org, Ruth’s long tenure of service on the AAMDSIF Board of Directors and Neil’s volunteer support. They are great ambassadors for AAMDSIF, which they turned to after Ruth – a transplant survivor - was diagnosed with aplastic anemia and MDS more than a decade ago.
Congresswoman Matsui has been a leading champion in the U.S. Congress for research funding on bone marrow failure diseases. Her commitment is inspired by the memory of her husband, Congressman Robert Matsui, who battled MDS while representing the same district that she now represents in the United States House of Representatives, the Fifth Congressional District of California.
Dr. Young's research interests are in human hematopoiesis, aplastic anemia and the pathogenesis and treatment of bone marrow failure; parvoviruses, hepatitis viruses, immune response to virus infection, apoptosis, interferon, cytokines, and other interleukins, and the mechanisms of genomic instability. His research includes direct patient care and clinical protocols for the treatment of bone marrrow failure; basic science laboratory experiments involving normal and abnormal blood cell production; and epidemiologic studies of aplastic anemia.