Chief Executive Officer  
Kathleen Weis

Kathleen Weis, Chief Executive Officer: Most recently, Weis held the position of CEO of the American Red Cross Gold Country Region in Sacramento, California. Kathleen has previously served the Red Cross in a variety of capacities including as Chief Operating Officer for the Red Cross in same Region and Senior Director of Humanitarian/ Information Technology Service Delivery from the Red Cross Headquarters in Washington, DC.  Prior to her career at the Red Cross, she worked in the private sector for Allscripts Healthcare Solutions, the Bulletin of the Atomic Sciences, and PriceWaterhouseCoopers. Weis holds a Master’s Degree in Public Service from DePaul University and received her B.A. from Michigan State University.

Kathleen is very much looking forward to continuing to focus on the Foundation’s priorities of reaching more patients, caregivers, and healthcare providers, as well as funding and disseminating research that advances treatments and improves the lives of patients with aplastic anemia, MDS, and PNH .

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 AA&MDSIF 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.

Paul previous worked at AA&MDSIF as the Director of Patient Programs and Services, and is proud to be rejoining the team after a 4 years hiatus. He looks forward to improving and expanding the educational programs he helped create and to introducing new offerings that will make high quality information on bone marrow failure diseases even more accessible to patients and their families. One thing Paul values most about working at AA&MDSIF is the continuous opportunities to engage directly with bone marrow failure disease patients, because “this is the best way for me deeply understand what patients need – and to know how I can best support them in becoming even stronger self-advocates for their best care and treatment.”

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 Learning Center. She obtained her Bachelor's Degree in Buisness Managment from Mount St. Mary University in 2013 and recently earned her Master's Degree in Health Administration. Angie also interned with AA&MDSIF over the summer of 2013.

Angie began her time at AA&MDSIF as a summer intern but it was the organization’s active work with patients and families that compelled her to stay on past her internship. The Foundation’s team atmosphere and commitment to its constituents are what drive her to work as hard as she does. She believes that “patient advocacy and activism are two major aspects of what helps support patients who are going through a challenging time in their lives”.  Angie enjoys spending her down time with her family and friends and takes any chance she can to head off to the beach.

Leigh Clark

Leigh Clark, Patient Educator.  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.

When Leigh came to AA&MDSIF, she was impressed with how committed the organization was to helping patients and families through education and research.  And it is the patients and families who reach out to us that motivate Leigh to go that extra mile in giving them whatever assistance they need. Connecting with them and helping them locate the information and resources they need brings Leigh a great sense of satisfaction in her work knowing that she is helping.  Leigh has also come to realize how important it is to do your best every time because “you never know what small thing you may say that will positively impact someone’s life and help.”  Outside of work, Leigh loves to spend time with her family and volunteer with other charitable organizations.

Becca Scott

Becca Scott, Program Support Specialist. Becca provides ongoing support for all patient focused educational programs. She coordinates registration websites, assists in marketing outreach, and provides additional support for patient and family conferences. She serves as the person of contact for all webinar speakers and provides technical support for the Online Learning Center. 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.

Becca was drawn to AA&MDSIF because of its direct interaction with patients and their families and her coworkers’ passion to positively impact the lives of others. She enjoys the “all hands on deck” atmosphere and believes when people from different backgrounds collaborate, they can provide the best level of service to patients and healthcare providers. The community AA&MDSIF serves has inspired Becca to work hard to make a difference of her own. Outside of work, Becca enjoys spin classes, cooking, and spending time with friends.

Research and Health Professional Programs  
Ellen Salkeld
Ellen J. Salkeld, Senior Director of Research and Health Professional Programs. 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.
Ellen's early career was launched in work with nonprofit health foundations in her native Michigan. She welcomes the opportunity to return to that arena with the additional skills and perspective gained through academic and professional work comprised of interaction with individuals coping with chronic illness in variety of settings. AA&MDSIF drew her attention and admiration for its comprehensive style of working with patients to improve quality of life. When not working, she enjoys outdoor activities, traveling with her spouse, and tending to the many rescued greyhounds they've adopted over the years.
Alice Houk

Alice Houk, 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.

It was important to Alice that the focus of the AA&MDSIF mission was on the patients and  caregivers.  In addition, Alice was drawn to how close and connected the community is due to the rarity of the diseases.  This is part of what drives Alice to work so hard alongside healthcare professionals in being a “partner in patient care.”  She knows how important it is to provide quality resources for healthcare professionals so that they in turn can provide the quality care patients need and deserve.  Knowing that she is able to directly help caregivers and patients gives Alice a great sense of satisfaction. She is especially touched by the many couples and families who do whatever they can do to support their loved ones. Away from work, Alice enjoys travelling with her family along with tending to her garden and cooking.

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.

Patient-centered coalitions challenge preconceived notions of scientific and medical authority, and empower patients living with chronic diseases. While expert knowledge is crucial for discovering new treatments and caring for patients, knowledge that is acquired intuitively also deserves a voice.

Serap Akigoslu 

Serap Akisoglu, Chief Development Officer. Serap brings to AA&MDSIF 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.

Serap is proud to be representing AA&MDSIF and raising awareness and research funding for bone marrow disease.  “I am deeply committed to advancing our mission and empowering patients and their families with education and treatment options.”

Nila Vehar

Nila Vehar, Annual Campaign Officer.  Nila is responsible for annual giving and donor relations. She ensures that we hold timely and appropriate communication with donors. Nila received her Bachelor of Science in Economics from Robert Morris University and has taken graduate level courses in the fields of ethics studies and public policy from Georgetown University and George Washington University. She has over 25 years of nonprofit management and fundraising experiences.

For Nila, working at AA&MDSIF means working at a place that is respected by the patients and families we serve as a “clear leader in the healthcare field”.  It is the patients themselves who give Nila all the motivation she needs to work extremely hard and never stop listening, learning, and giving them all the support they need.  Nila cites the three most satisfying aspects of working at AA&MDSIF as meeting and talking with patients and families, creating and maintaining long lasting relationships with donors, and working with her colleagues who are supportive, creative, and as dedicated as she is to the Foundation’s mission. Outside of work, Nila likes to take in theatre, art and musical performances, and spending time with her lovely cat, Carly.

Desiree Ruiters

Desiree Ruiters, Industry and Corporate Relations Officer. Desiree is responsible for corporate development and grants management. Establishing and maintaining relationships with AA&MDSIF’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.

Desiree was drawn to AA&MDSIF because of its casual atmosphere that invited a strong sense of family and togetherness. She takes great pride in her job and working with the people around her.  It is so rewarding to know that “we are helping patients and family members learn more about their diseases through distribution of our educational materials and conferences.”  Working here has also given Desiree a new appreciation for how quick life can change and she cherishes every moment she has with her family and friends. Her work also brings her immense satisfaction in knowing that AA&MDSIF is making a difference in people’s lives by giving them hope. Outside of work, Desiree is a soccer mom and spends almost all of her time off travelling to soccer tournaments. She also enjoys taking some time for herself to read light novels.

Martha Crews

Martha Crews, Community Development Officer. Martha organizes volunteers with fundraising events and other activities, and manages the development of our Communities of Hope program. She has over 12 years of experience with the International MOMS Club and holds prominent positions in several PTA organizations. Martha holds a degree in Mathematical Methods in the Social Sciences from Northwestern University.

Martha describes her job at AA&MDSIF as “the best job in the world” because she has the privilege to work with our wonderful patients and families on awareness and fundraising events that are important to them.  It is incredibly rewarding for her to work for a patient-centric Foundation that does such good work supporting patients and families. The connections and personal relationships she has made with patients and families inspire her to do her best.  It is these relationships that are the most satisfying part of working at AA&MDSIF for Martha. In turn, Martha can use what she learns from patients and families to improve her own work every day.  When she is not at work, Martha spends her time volunteering in her community doing everything from leading her daughter’s Girl Scout troop to helping manage the local summer swim team. She is also very supportive of her husband’s naval reserve commitment.

Mike Breuer

Mike Breuer, Development Support. Mike’s major responsibilities include being the primary contact for Stories of Hope, administering our scholarship and Combined Federal Campaign programs, donor research, amd managing various projects of the Development Department. He studied journalism at the University of Wisconsin amd later received a Certificate in Nonprofit Management from the University of Illinois and a Certificate in Corporate Communications from Elizabethtown College.

Mike was drawn to AA&MDSIF because of its small yet effective structure and likens it to “the little engine that could”.  This atmosphere, along with the Foundation’s ability to help patients in need are very important to Mike.  He takes great pride in knowing that his work can make someone else’s life just a little bit easier.  He says “I know my work means something. That’s all you can ask out of life.”  In turn, Mike also draws inspiration from our patients and their families.  Their stories and trials have given him a new perspective and new focus when facing any challenges that may come his way. When Mike is not hard at work, he enjoys following his favorite baseball team, the New York Mets, and traveling the country visiting historical sites. His favorite time period is the post-Civil War American West.

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 publications, including the Insider, eInsider, and MDS Connection. 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.

Bob enjoys being a part of AA&MDSIF’s mission to support individuals who have been diagnosed with a rare disease and is inspired by how “courageous, unyielding, and good-natured most all of our patients are in the face of often difficult circumstances.” Knowing that the work he does helps bring important information to the patient, research, and healthcare communities is one of the most satisfying aspects about working at AA&MDSIF.  In his free time, Bob works on maintaining his 80 year-old brick Cape Cod home in suburban Maryland, has some involvement with music, and has an appreciation of vintage automobiles.

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 our email communications, social media, and online activism tools. Benita also manages government advocacy campaigns for the foundation including advocating for Department of Defense research funding. She studied political science at the University of Pittsburgh and Government Relations at George Washington University.

“Working for a cause or mission I believe in” is what’s important to Benita. Consumer advocacy and activism are benchmarks of what makes working at AA&MDSIF so meaningful to her. Putting patients first in designing online information and interactive tools is all the motivation needed to keep AA&MDSIF at the forefront of providing medical and support information online.  In addition to enjoying time with friends and family, Benita likes playing piano and creating glass mosaics.

Elise Harper

Elise Harper, Database Manager/Adminsitrative Support.  Elise joined AA&MDSIF 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.

Elise was drawn to AA&MDSIF because of its proven track record as a service organization that truly makes a difference for people. Being part of a team like this is powerful motivation for Elise whose strong work ethic is driven by the desire to be successful so that she can support her coworkers at AA&MDSIF. Working at the Foundation has given Elise more perspective on her own personal life with the realization that life is short and needs to be made the most of. AA&MDSIF has allowed her to find satisfaction in her work knowing that she has been a helping hand to another person in need. When she is not at work, Elise loves to take her young son to museums and parks.

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.

Paul joined AA&MDSIF and was immediately drawn to the Foundation’s commitment and drive to help patients and families in any way feasible. This strong commitment and sense of team is what motivates him to work so hard. He knows that by supporting his coworkers at AA&MDSIF he is helping them to make a difference in someone’s life and that is an incredibly satisfying feeling. It is also great to be part of an organization that has such a strong sense of team. Outside of work, Paul is an aspiring video gaming journalist and enjoys both playing and writing about games.