Chief Executive Officer

Kathleen Weis

Kathleen Weis, Chief Executive Officer.  Prior to being named CEO of AAMDSIF, Kathleen Weis was CEO of the American Red Cross Gold Country Region in Sacramento, California. She previously served the Red Cross in a variety of executive management capacities, including as its Chief Operating Officer in the same western region, which followed her position as Senior Director of Humanitarian/ Information Technology Service Delivery at the organization’s Washington, D.C. headquarters.

Before her extensive career with the Red Cross, Kathleen worked in the private sector for Allscripts Healthcare Solutions, the Bulletin of the Atomic Sciences and PriceWaterhouseCoopers. Currently, she’s a member of the steering committee for the MDS-Alliance – a worldwide collaboration of national MDS patient support and advocacy groups – and she’s on the board of directors for the National Organization for Rare Disorders (NORD).

Kathleen has previously served on the board of directors for TLCS, Inc., a Sacramento-based organization providing mental health and supportive housing services for people with mental health challenges. She holds a Master’s Degree in Public Service from DePaul University and received her B.A. in Communications from Michigan State University.

Patient Advocacy

Paul Scribner

Paul Scribner, Senior Director of Patient Advocacy Programs. Paul oversees the development, implementation and ongoing improvement of all patient-related programs, support services and publications. Prior to joining AAMDSIF, he held the position as Senior Director of Information Services at the National Epilepsy Foundation, overseeing their Epilepsy and Seizures 24/7 Helpline, online store and the development of all consumer publications. Paul holds a Master’s Degree in social work and is a Licensed Clinical Social Worker in Maryland. He brings more than 17 years of experience working with national and international voluntary health organizations focused primarily on health and disability related issues.

Angie Onofre

Angie Onofre, Director of Patient Programs and Services. Angie directs the design, development, and implementation of patient programs and services. This includes content development, curriculum review, patient publications, webinars, patient and family conferences and the Online Academy. She obtained her Bachelor's Degree in Business Management from Mount St. Mary University in 2013 and recently earned her Master's Degree in Health Administration. Angie interned with AAMDSIF over the summer of 2013.


Leigh Clark

Leigh Clark, Information Specialist. Leigh communicates with patients and their families around the world through telephone and email contact. She provides information on treatment options, financial support, and education, and connects them to resourses. Her previous experience includes working as a patient advocate for individuals with developmental disabilities. She is currently pursuing a nursing degree.

Leigh Clark Becca Scott, Program Support Specialist. Becca provides ongoing support for all patient-focused educational programs. She coordinates registration websites, assists in marketing outreach, supports patient and family conferences and provides technical support for the Online Academy. She also maintains all patient advocacy database records and reports. Becca earned her Bachelor’s Degree in Health Sciences with a concentration in Public Health Education from James Madison University in 2015.


Ellen Salkeld
Ellen J. Salkeld, Senior Director of Research. Ellen works with the Foundation's professional affiliates and Medical Advisory Board to provide management and oversight to the MDS Clinical Research Consortium, the annual grants review process, and professional symposia. After earning her doctorate in medical anthropology and completing a postdoctoral fellowship in clinical research, she gained experience in health services research, program evaluation, and mixed methods research. Most recently she has worked with clinical researchers in academic medicine to enhance collaborative efforts around implementation and translational science, and research consortia.
Andrea Lutz
Andrea Lutz, Clinical Research Consortium Project Manager. Andrea Lutz, Clinical Research Consortium Project Manager:  Andrea manages our MDS Clinical Research Consortium, a collaboration of six leading medical institutions designed to maximize results of their MDS clinical trials.  She also serves as the primary contact for anyone interested in engaging with the MDS CRC. Prior to joining AAMDS, Andrea worked at the Cleveland Clinic in Blood and Marrow Transplant Research and then as a Hematology Oncology Clinical Trail Research Coordinator.  She earned her Bachelor’s degree in Business Administration with a concentration in Management from the University of Mount Union.

Health Professional Programs

Alice Houk

Alice Houk, Senior Director of Health Professional Programs. Alice manages the research grant program, monitors newly published research and drug company announcements, coordinates the Scientific Symposium, serves as liaison to the Medical Advisory Board, and is the primary contact with other professional and patient organizations. She also leads efforts in educating health professionals about bone marrow failure diseases.  Her nonprofit experience includes having served as a national organizer for the SAFE KIDS campaign and as a regional program coordinator for the March of Dimes. In addition, Alice has extensive experience working with volunteers in educational, fundraising, and program areas. She holds a Master's degree in Health Policy from the University of Maryland.

Matt Lesser

Matt Lesser, Program Support Specialist for Research and Health Professional Programs. Matthew assists in ongoing program support for patient focused research projects, inclusive of patient recruitment and communication. He also provides support in the annual grant application process including filing, reporting, record maintenance and follow-up. Matthew began his work in the nonprofit sector while obtaining his bachelor’s degree from DeSales University, where he worked for the Moravian Historical Society in Nazareth, PA. He continued his nonprofit work at New Kensington Community Development Corporation in northeast Philadelphia in the spring and summer of 2015. Matthew also holds a master’s degree in Science, Technology, and Society from Drexel University. Outside of work, Matthew enjoys physical fitness training, reading and taking in the history of Washington, DC.


Serap Akigoslu

Serap Akisoglu, Chief Development Officer. Serap brings to AAMDSIF a wealth of non-profit fundraising and management expertise that has included working in higher education, healthcare, advocacy, cultural, and the international arenas.  Serap will lead development efforts with foundations, corporations and individuals raising funds for research and education for patients, caregivers, and healthcare professionals.  Serap holds a master’s degree from the University of Pittsburgh and received her BA from Duquesne University.

Desiree Ruiters

Desiree Ruiters, Industry and Corporate Relations Officer. Desiree is responsible for corporate development and grants management. Establishing and maintaining relationships with AAMDSIF’s partners in the pharmaceutical and healthcare services area is a key part of her work. She studied at the University of Capetown and her previous experience includes work in accounting and asset management at Mobil Oil in South Africa before she moved to the Washington, DC area.

Margaret Fitzgerald

Margaret Fitzgerald, Community Development Officer.  Margaret works with volunteers around the country to organize and execute grassroots fundraising events. As a development professional, she has a broad range of expertise in the nonprofit world, including work with various educational organizations, advocacy groups and, most recently, with a grant making foundation. Margaret holds a BA from Mount Holyoke College and volunteers with the Junior League of Washington in her free time.

Claire O'Neill

Claire O’Neill, Development Support Specialist. Claire provides support for the efforts of the development department. She is responsible for grant proposal preparation and submission, assists with the direct mail program, assists in organizing community events, and manages donor engagement projects. Claire earned her Bachelor’s Degree in Community Health from the University of Illinois at Urbana-Champaign and a Master of Public Health in Health Policy and Management from the Emory University Rollins School of Public Health.


Barbara Holzer

Barbara Holzer, Senior Director of Communications and Outreach. As a seasoned broadcast journalist, Barbara is a creative communicator who has covered national news as a writer, producer and editor at several television networks in New York. She also has corporate communications experience and, most recently, managed public affairs at a nonprofit consumer advocacy group in Washington, D.C. Barbara leads the foundation’s press, publications and marketing office. She studied journalism at Syracuse University.

Robert Burleson

Robert Burleson, Publications Manager. Bob manages the content and development of our various publications, including the Foundation Update and MDS Update. His prior experience includes many years working for commercial and nonprofit medical and scientific publishers, and more recent experience in scientific professional society membership and member relations. With a strong publication background, Bob joined us in January 2011.

Tricia Maddrey Baker

Tricia Maddrey Baker, Social Media and Communication Manager. Tricia is responsible for expanding the Foundation’s online connection between our patient and health professional communities and the education, support and research programs that we offer. Her diverse background ranges from small nonprofits and associations to corporate philanthropy. She’s also achieved excellent results in stakeholder engagement and credits her parents with her passion for service, as well as her artistic vision. 


Benita Marcus

Benita Marcus, Senior Director of Operations. With extensive experience in information and Web site management for nonprofit organizations, Benita leads efforts to enhance the foundation's online presence and web-based services, including email communications, social media and online activism tools. Benita also manages government advocacy campaigns for the foundation, such as promoting Department of Defense medical research funding. She studied political science at the University of Pittsburgh and Government Relations at George Washington University.

Elise Harper

Elise Harper, Database Manager/Administrative Support. Elise joined AAMDSIF in 2010 and handles our financial processes and manages our member database. She acts as the first contact between donors and the foundation, ensuring the smooth processing of requests for information and receipt of contributions. She has experience in customer service and restaurant management.

Paul Stehlin

Paul Stehlin, Digital Systems Specialist. Paul is responsible for setting up and scheduling our out going email newsletters and alerts along with maintaining and updating our website and other online resources. He earned a Bachelor's Degree in History from the University of Maryland in 2012.