K. Kimberly McCleary is the Association's president & chief executive officer. Kim directs the Association's research, engagement and development strategies focused on making ME/CFS understood, diagnosable and treatable. With over two decades of service to the CFS community, Kim has met with hundreds of patients and their loved ones, scientists, legislators, public health officials, health care professionals and journalists; she has made scores of presentations at ME/CFS workshops and conferences and has written many articles about a wide range of research, policy and education issues. Kim has testified before Congress, has been featurd in television, radio and print interviews as a leading authority on ME/CFS and has served on many expert committees for private and public institutions.
In the mid-1990s, Kim was instrumental in uncovering $12.9 million in misspending by the U.S. Centers for Disease Control & Prevention for its CFS program and she worked with the agency and members of Congress to restore those funds to research and awareness activities. She helped develop a 1998 policy ruling for the Social Security Administration that recognized CFS as a disabling condition and she fought to create and sustain a dedicated federal advisory committee to the Secretary of Health and Human Services on ME/CFS research and education.
In 2012, Kim led the Association’s launch of its Research Institute Without Walls and the Partnering to End Pain project selected by Sanofi U.S. as a finalist in the company’s Collaborate | Activate Innovation Challenge. That year she also represented the Association at the Milken Institute Global Conference and FasterCures’ Celebration of Science and Partnering for Cures conference. She is a member of the CFIDS Association's Board of Directors and the international Association of Fundraising Professionals.
Prior to joining the CFIDS Association’s staff in early 1991, Ms. McCleary was vice president of a healthcare management consulting firm. She is a graduate of the University of North Carolina at Chapel Hill, a native of upstate New York, a wife and mother of two young adults. She met her husband, Kofi, through former board member Wilhelmina Jenkins (he is her son), so she also has close famliy ties to ME/CFS. She was honored by Redbook magazine as a “Mother and Shaker” in healthcare and has received other awards and formal recognitions for her work on behalf of the CFS community.
Kim blogs regularly about ME/CFS research and policy at http://www.research1st.com/author/kimmccleary/
Kim Almond,who joined the Association in May of 2000, is the Association's Operations & Network Administrator. In addition to handling The Chairman's Circle, and meeting planning duties, Kim manages the look and content of www.cfids.org and directs the Association’s online development efforts. In 2002 Kim launched the Association's e-newsletter, Research1st News, formerly known as CFIDSLink.
Kris Hopkins began her tenure in September 1990 as a temporary employee assisting the Association with its 1990 research conference in Charlotte, NC. As the Association has grown over the past two decades, so have Kris' responsibilities and contributions. Today, Ms. Hopkins serves as chief financial officer, and provides vigilant and responsible stewardship of the Association's financial resources.
Leigh Reynolds joined the Association in January of 2013 as the organization's first engagement manager, working to broaden and deepen understanding and awareness of CFS. The goal of the position is to grow an even stronger CFS community, empowering patients and engaging greater numbers in the cause in a meaningful and powerful way. This will be achieved by streamlining and maximizing communications to share news about ways in which the Association is driving and supporting CFS research investment, as well as fostering academic, government and industry involvement to solve CFS. Leigh has worked in the nonprofit arena for nearly two decades, most recently serving as the vice president of communication and engagement for a small event management and consulting firm whose client base is almost exclusively non-profit organizations, wherein she helped build a new national engagement and fundraising campaign for an orphan disease, led an effort to re-brand and re-launch a national fundraising effort and served as part of the team to help exponentially grow a number of existing events.
Joining the Association in December of 1996, Gloria Smith served as a part-time office assistant, but she has since become the Association’s Office Manager and BioBank Coordinator. Gloria is responsible for directing the myriad of the day-to-day office duties, including data entry and processing, the organization of in-house mailings; and since 2010 she has been consenting patients and healthy controls for the SolveCFS BioBank.
Mark Stone joined the Association in October of 2012 as the Director of Development. In this role Mark will lead fund development to support growth and expansion of the Catalyst Fund, our research program and other mission-focused activities and infrastructure that will lead us to meet our organizational funding goals. Mark has a highly productive lifelong commitment to serving nonprofit organizations. He served as chief operating officer of the Polycystic Kidney Disease (PKD) Foundation from 2004 to 2011 where he was the primary architect of a successful restructuring of the organization that more than doubled their budget, scope and impact. More recently, Mark served as the chief executive officer of the American Association of Physicians of Indian Origin, a national federation of 150 Indian physician organizations representing 100,000 physicians across America. Mark also provided executive leadership to AAPI’s charitable foundation, expanding 17 clinics and hospitals in India funded by AAPI and dozens of free clinics serving under-served communities in the U.S. Mark’s earlier years were spent in several leadership positions with an international relief organization and serving faith-based communities.
Virologist Suzanne D. Vernon, Ph.D. has dedicated nearly two decades to solving ME/CFS. As a member of the U.S. Centers for Disease Control and Prevention’s CFS research group, Suzanne recruited an eclectic team of molecular biologists and computational biologists to merge data collected in laboratory, clinical and epidemiology studies of CFS. She became scientific director of the CFIDS Association of America in 2007 and now she leads the organization’s Research Institute Without Walls, the first initiative focused on safe and effective treatment for CFS.
At the core of the Research Institute Without Walls is the SolveCFS BioBank, an integrated patient registry and sample biorepository. Early in her tenure with the Association, Suzanne recognized that access to well-characterized clinical populations was a barrier to engaging more scientists in the hunt for answers. At the same time, she found individuals living with CFS very eager to participate in research. Through a shared infrastructure provided by Genetic Alliance’s BioBank, she was able to launch the SolveCFS BioBank. There are now nine studies underway utilizing or expanding BioBank resources. She believes that this kind of patient-centered research approach is a crucial asset in the search for effective treatments.
Suzanne is a sought-after speaker at scientific and medical conferences, but one of her favorite venues is speaking and interacting with the patient community. “No one knows CFS better than the patients. To me, patients are the solution. That’s why our research program is patient-centric and citizen-powered.”
Dr. Vernon continues efforts to build strong collaborations with CFS research groups and investigators worldwide, documenting the breadth and depth of studies across multiple disciplines and identifying gaps and opportunities that warrant prioritization. She serves as a subject matter expert in numerous settings, including scientific proceedings, policy meetings, development activities and conferences for health care professionals and patients. Suzanne has authored more than 80 scientific papers, contributed to book chapters and written dozens of articles for a variety of publications. She has been interviewed for news features in several science magazines including Science, Nature, and Science News and for articles in the Wall Street Journal, New York Times, San Francisco Chronicle, Saturday Evening Post, Smithsonian and “O” magazine.
Page last updated March 6, 2013.