Position Background
John Huber

John Huber, Executive Director: John has more than 40 years of senior leadership experience in both national and international nonprofit organizations. He has served as Executive Director of the American Urological Association Foundation and the Lupus Foundation of America. He also served as Vice President of Membership Services and Leadership Development at Goodwill Industries International. His expertise includes creating and implementing new organizational models, programs and strategies, securing financial resources, developing patient-centered services and training nonprofit executives and board members. John holds a Master’s degree in Adult Education from the University of Wisconsin, Milwaukee.

John joined AA&MDSIF and was impressed by the potential the Foundation had for serving patients and families in ways that no one else can. This ties directly into his powerful motivation to work as hard as he does.  John knows that the Foundation has much more it can do to better serve the patients, families, and health care professionals who rely on AA&MDSIF.  He tries to approach most of what the Foundation does as if he were “wearing the patient’s sneakers.”  By taking this perspective, John can better understand what they are going through and what they need the Foundation to do to keep going.  It is this knowledge that we can make a difference in people’s lives that is so satisfying for John.  In his off time John enjoys playing guitar and driving his classic 1963 MGB.
Benita Marcus

Benita Marcus, Senior Director of Information/Management.  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.

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.
Stephanie Chisolm

Stephanie Chisolm, Director of Patient Information and Special Projects. Stephanie provides direction and oversight to the review, development, and integration of all patient information including content for printed materials, web-based information, and electronic publications and materials. Additionally, she reviews patient program outcomes and effectiveness and designs appropriate metrics.  Stephanie comes to AA&MDSIF with over 20 years experience in health education for patients and providers. Originally from New York, Stephanie has worked in patient and professional education in nonprofit medical organizations in the Washington, DC area, as a community health educator in a New England hospital, and as an assistant professor in the Health Sciences Department at James Madison University in Virginia. Stephanie earned her PhD in Health Education/Health Promotion from the University of Alabama at Birmingham in 2000.

When Stephanie joined AA&MDSIF, it was the organization’s commitment to putting patients and families first that really made the Foundation so attractive to her.  In addition, she understands how important it is for patients to understand just what they are going through and how our educational materials can help bring that understanding to patients and healthcare professionals.  Connecting with those who have been helped by AA&MDSIF is what drives Stephanie to work as hard as she does and as she put it, “it feeds my soul because I hear from patients and family members that we really do make a difference.”  In her off time, Stephanie enjoys baking cakes, cookies, and cupcakes and bringing them in to share with the AA&MDSIF staff.

Catrell Harris

Catrell Harris, Director of Patient Programs and Services.  As the Director of Patient Education, Catrell 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. Most recently, he comes to AA&MDSIF from the National Institutes of Health at the National Cancer Institute, where he worked in the translational research program in grants administration. Catrell has a biomedical research and public health background with more than ten years of professional experience. Catrell completed his undergraduate studies in Biology and Spanish from Morehouse College and received his MPH from American Public University. He is currently working on his doctoral degree (DrPH) in Public Health Advocacy and Leadership at Morgan State University.

Catrell joined AA&MDSIF to be part of an organization that has an immeasurable impact on the lives of those with bone marrow failure diseases, both nationally and internationally.  The best motivation for Catrell is knowing that the contributions he makes really do make a difference in the lives of patients and families.  When people express their thanks at conferences, it is a wonderful feeling.  Outside of work, Catrell loves to spend time with his family and is always ready to sit down and spend some time with a good book.

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.

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.

Ramona Crawford

Ramona Crawford, Grants and Industry Relations Officer.  Ramona 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. Prior to joining AA&MDSIF, Ramona had a diverse nonprofit career that included work for medical and scientific professional organizations, The American Red Cross, and the Greater Cincinnati Convention and Visitor’s Bureau. 

Ramona was ready for a change and for the opportunity to work in a smaller setting with associates in closer contact with patients. She enjoys the challenge of bringing about partnerships between all of the parties involved in providing care for patients including the pharmaceutical industry, health care professionals, and the patients themselves.  Each party has a stake in the outcome and “everyone is a winner when there is collaboration.”  Bringing out these partnerships is enormously satisfying for Ramona because it makes it possible to move forward with important programs and services.  When she is not fostering important alliances and partnerships, Ramona loves to spend her time gardening. She has a favorite patch of African Violets that she been growing for years.

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.

Desiree Ruiters

Desiree Ruiters, Database Manager. With an accounting background, Desiree 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. Desiree 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.

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.

Patient Educator

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.

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.

Angie Onofre

Angie Onofre, Program Support. Angie provides program support in the areas of patient and health professional programs including webinars and patient and family conferences.  She obtained her Bachelor's Degree in Buisness Managment from Mount St. Mary University in 2013 and is currently pursuing 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.

Elise Harper

Elise Harper, Adminsitrative Support.  Elise joined AA&MDSIF in 2010 and assists with database maintenance and general office support. 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, Program Support - Web. Paul assists with maintaining and updating our website and other online resources.  He also helps assemble requested educational materials for patients and health care professionals.  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.