Leadership in Service Award

Leadership in Service Award was presented to Kevin Lyons-Tarr, the immediate past chair of the Board of Directors. Kevin joined the AAMDSIF Board of Directors in November of 2009 and served until 2023, including eleven years as Board Chair. Kevin’s passion for the mission of the Foundation was driven by his wife Jenny’s CMML/MDS diagnosis in 2003 and subsequent seventeen-year medical journey.

Christopher Mills volunteers for AAMDSIF by providing Pro Bono legal services. Chris ensures that the needs and interests of the Foundation are his priority in the myriad of work he does for the Foundation. His efforts situate the organization to be prudent and well-positioned today and in the future.

Linda Rothstein-Sosnick has inspired fellow patients for the past 12 years by initiating and leading a New Jersey Support Group.  As the worldwide health crisis hit, Linda pivoted to the virtual platform for this group, continuing to share her knowledge and experience to benefit others. Attendance at this group continues to expand as Linda continues to set an example of giving back to her fellow patients.

COVID-19 has forever changed our world. While there is hope for a vaccine in the coming year, our frontline healthcare workers have been battling this virus since early this year. Their fight is not yet over and today, we honor their bravery, their sacrifice, and sometimes their lives with their determination to help people.  From our own Medical Advisory Board to your local infusion clinic, from the biggest cancer centers to a small-town hospital, we give our grateful thanks to our frontline healthcare workers and invite you to join us in honoring them today. 

For the past decade, Stephanie Hamm has led, organized and directed the AAMDSIF’s 5K Run/Walks in Houston and Los Angeles to promote awareness about bone marrow failure diseases and also raise much-needed funds to support patients and families who need our support.  Her leadership in service has raised hundreds of thousands of dollars to also help fund AAMDSIF programs and research to find a cure.  AAMDSIF is indebted to Stephanie for her dedication and service.   

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. 

John Huber was the Executive Director of AAMDS International Foundation from 2006 - 2016. During his tenure, John led a series of strategic plans to more effectively support bone marrow failure patients and also drive research to find a cure.  Through John’s leadership, the Foundation forged the innovative MDS Clinical Research Consortium, an innovative collaboration among exceptional clinical researchers at six of the nation’s leading academic medical institutions and a game-changing project which aligned with the strategic goals and direction of AAMDSIF.  John also led the creation of the…

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…

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…

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…