AAMDSIF Staff | Aplastic Anemia and MDS International Foundation

AAMDSIF Staff

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.

Elise Harper

Elise Harper, Database Manager/Administrative Support. Elise joined the Foundation in 2010 and serves in a variety of functions. She provides admin support for the CEO, manages our database of patients and health care professionals and handles financial processes. With extensive experience in customer service, she also is our donors’ first point of contact, ensuring that receipts for contributions and information requests are handled in a timely manner. What’s more, Elise keeps track of our event and education materials inventory and is in charge of shipping.

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 Education. 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 received her Bachelor's Degree in Business Management from Mount St. Mary University and recently earned her Master's Degree in Healthcare 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 resources. Her previous experience includes working as a patient advocate for individuals with developmental disabilities. She is currently pursuing a nursing degree.

Research

 
 
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 the Foundation, 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, D.C.

Development

Serap Akigoslu

Serap Akisoglu, Chief Development Officer. Serap brings a wealth of nonprofit fundraising and management expertise to the Foundation, including her work in higher education, health care and advocacy in cultural, national and international arenas.  She leads development efforts with foundations, corporations and individuals to raise funds for research and education for patients, caregivers and health care professionals. Serap holds a Master’s Degree from the University of Pittsburgh and received her Bachelor of Arts 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 the Foundation’s partners in the pharmaceutical and health care services area is a key aspect of her work. She studied at the University of Capetown, South Africa, and her previous experience includes accounting and asset management at Mobil Oil in South Africa before moving 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 Bachelor's of Art 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 's Degree of Public Health in Health Policy and Management from the Emory University Rollins School of Public Health.

Communications

 

 

Robert Burleson

Robert Burleson, Publications Manager. Robert manages the development and content of our publications, including the Foundation Update, MDS Update and Health Professionals Update newsletters. He is also responsible for the patient and health professional interviews that are featured in our newsletters and on www.aamds.org, and he oversees our patient guides and other education materials. Prior experience included employment in commercial medical publishing, nonprofit scientific publishing and scientific society membership management.

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.