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(The CAA Board of Directors takes a stand for we, asserting and recognizing that no one group has the answer or ‘the’ right approach and that there are many types of ME/CFS and therefore many speakers for it. Can a community of ‘We’ take hold in ME/CFS? Can we agree on broad goals and work towards them? Is that possible? Is it desireable? If it is how might the CAA need to change:? How might we need to change?
Coming up shortly – an interview with Jennifer Spotila, former Chairwoman of the Board and current Board member of the CAA)
NOT ONE ALONE
We are witnessing an extraordinary time in the fight to solve CFS, and the most important word in this sentence is “WE.”
Scientific interest in CFS is at an all-time high. Sustained media coverage by top outlets reaching the public and the scientific and medical communities has consistently presented CFS as a serious, life-altering condition that affects millions and warrants more attention. Activism in the patient community has been energized by new efforts spurred by individuals and small groups to engage policy makers and remind them of the harsh realities that CFS presents. Thought leaders within science, medicine, policy and government are responding and meaningful change is beginning to occur.
The culmination of these events proves a powerful and essential point: CFS will not be solved by one person or one organization alone.
- Not one patient alone can give voice to the suffering inflicted by CFS.
- Not one researcher alone can supply the evidence needed to objectively diagnose and effectively treat CFS.
- Not one clinician alone can treat the one million or more Americans afflicted with CFS.
- Not one government agency alone can deliver the services needed by people with CFS.
- Not one legislator alone can allocate the research funding necessary to solve CFS.
- Not one organization alone can exert the necessary pressure or provide the essential knowledge to the patients, researchers, clinicians, agencies, and policy makers that must coordinate efforts on all fronts to defeat CFS.
We need a diversity of strategies and tactics. We need a chorus of voices and opinions. We need coordination of effort, sharing of expertise and collaboration on a level greater than the CFS community has ever attempted.
At this critical time in CFS history, the CFIDS Association stands with you, firm in our resolve to stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private, and commercial investment. None of us is in this fight alone.
The Board of Directors
The CFIDS Association of America
Adam Lesser, San Francisco, California – Chairman
Adam has lived with CFS since 2003. Prior to getting sick, he graduated magna cum laude from Columbia University in 2001 with a degree in English literature and worked for two years as a news editor for NBC News, based in New York. He did additional work as a field producer for the network, including coverage of the 2004 Democratic Convention in Boston. Since leaving NBC due to his illness, Adam has pursued his interest in biochemistry and physiology, studying at Santa Monica College and working this past summer as the National Science Foundation funded Frontiers in Biological Research (FIBR) intern at UCLA’s Weiss Lab, which studies protein folding and single molecule spectroscopy. Adam attended the CFIDS Association’s Lobby Day in 2006. He was elected to the Board in 2007 and serves on the Development Committee.
Amy Divine, Boulder, Colorado – Vice Chairman
After beginning her career in social work as a youth services coordinator, co-founder of the Denver Youth Agencies Network, and gubernatorial appointee to the Colorado Juvenile Justice Advisory Committee, Amy Divine spent 10 years as a programmer, producer and consultant for national and international TV and cable networks. Divine was also a partner in The Drummond-Divine Company, a New York-based producer of children’s programming.
When CFS struck Divine in 1986, it brought her career in television programming to an end. She turned her focus to parenting, working as a community activist and participating as executive director of the Rita and Harold Divine Foundation. She co-founded Citizens Project, a nonprofit organization dedicated to pluralism, religious liberty and separation of church and state. She later founded Food for Thought Gatherings (FFTG), a nonprofit organization dedicated to increasing understanding within the community by bringing diverse peoples together for informal small group discussions. In the 1990s, on behalf of FFTG, Divine initiated and co-chaired the Community Conversation on Race, a coalition effort involving over 80 organizations and 900 individuals in local interracial discussion groups. Divine also served on the steering committee for the Colorado Springs Leadership Institute, the National Advisory Council of Americans United for Separation of Church and State, the Board of Directors of the Colorado ACLU and the Board of Directors of the Anti-Defamation League of the Rocky Mountain Region.
The Colorado Association of Nonprofit Organizations recognized Amy Divine in 2000 “for her efforts to bridge the religious, racial and philosophical divides in the Colorado Springs area.” She holds a Masters in Business Administration from UCLA and an undergraduate degree from the University of Michigan.
Jennifer M. Spotila, JD, King of Prussia, Penn. – Secretary
Jennie received a Bachelor’s degree in English literature from Georgetown University and a law degree from the University of Pennsylvania. She fell ill with CFIDS in 1994, just one year into her career as a litigation attorney at a law firm in Philadelphia. CFIDS forced Jennie to abandon her planned career, but she has remained as active as possible. A member of the CFIDS Association since her diagnosis, Jennie served on the Association’s Long Range Strategic Planning Committee in 1999 and became an active member of that committee again when she joined the Board in November 2005. Jennie was selected to chair the Board for 2008. In addition, she has served as secretary for her local Baha’i community since 2000. She is presently at work on a novel. She lives outside of Philadelphia with her husband, David, and their dog. Jennie was featured on the November 2, 2006 edition of NBC Nightly News, the first media story launching the national public awareness campaign. Jennie gave 14 media interviews on November 3, 2006 as part of the satellite media tour conducted with CDC.
Bruce Allshouse, New Castle, Del. – Treasurer
Bruce is an experienced executive with a diverse background in the electric utility industry. His areas of expertise include nuclear maintenance, project management, process reengineering, organizational design and change management. Bruce spent most of his career at Philadelphia Power Company and is now the principal of WSC International, LLC, a consulting firm that works with companies in Ohio, Canada, Japan and elsewhere to plan and manage major strategic transitions. He has taught change management at the University of Pennsylvania’s Wharton Graduate School of Management. Bruce’s adult daughter, Cari, has CFIDS. Bruce is chairman of the Association’s Development Committee and serves as treasurer.
Christoph Bausch, PhD, St. Louis, Missouri
While working on his doctorate degree in molecular microbiology at Ohio State University, Christoph became ill with CFS. Eventually he recovered enough to finish his dissertation and take a postdoctoral research position at Stowers Institute for Medical Research focusing on genetics where he worked from 2003-2006.
Bausch joined the biotech firm Sigma Aldrich as a senior research and development scientist in the spring of 2006, and this year transferred to business development, working as a strategic marketing analyst for the company. He is also working toward his MBA at St. Louis University.
Diane Bean, Bethesda, Maryland
Diane is a member of the U.S. Foreign Service whose daughter Lauren has CFS. Diane previously served on the Board in 2005, although career demands forced her to step down before her term ended. She is easer to resume her service in 2010.
Katrina Berne, PhD
Trina is a clinical psychologist who has had CFS since 1994. Disabled since 2001, she currently does a limited number of consultations with CFS patients. The author of Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses: The Comprehensive Guide and Running on Empty, Trina has also authored articles, audiocassettes, brochures and online publications about CFIDS. She was an early contributor to the Association’s provider education curriculum and was a speaker at the Association’s 1997 conference in Chicago, where she was recognized with the Iverson Award for Distinctive Service. Trina joined the Board in November 2004 and serves on the Nominating Committee.
Vicki Boies, PsyD, Chicago, Illinois
Vicki Boies and her husband Bill have been active supporters since 1995 out of concern for their daughter, who has CFS. Vicki is a clinical psychologist in private practice in Chicago. She has served on several local government boards which give grants to social services agencies and other types of organizations. Most recently, she was the president of a community mental health district board with taxing and grant-giving authority.
Stuart Drescher, PhD, Salt Lake City, Utah
Dr. Stuart Drescher is a psychologist whose practice includes individual and group psychotherapy in the areas of health psychology and personal growth. He treats people who have CFS and fibromyalgia, as well as illnesses ranging from Parkinson’s disease to cancer. Additionally, he works as an organizational consultant with businesses and nonprofit organizations. In 1989, while skiing in Colorado, he experienced a sudden onset of CFS.
During the acute phase he had to suspend his practice. Subsequently, he was able to gradually return to a full time practice, and with time, resume skiing, hiking and whitewater river rafting. He continues to live with the constant need to pace himself.
Drescher received his Bachelor of Arts degree from Carleton College and his Master’s and Ph.D. degrees from the University of Utah. He has been active on the board of Organization for Fatigue and Fibromyalgia Education and Research (OFFER), founded by board member Lucinda Bateman, MD, and has participated in their conferences.
K. Kimberly McCleary, Charlotte, NC
Kim is the Association’s President & Chief Executive Officer. Since 1991 Kim has directed the Association’s education, public policy and research programs. She also serves on the Association’s Board of Directors and all of its standing committees. While she participates in virtually every aspect of the organization’s operations, Kim is most actively involved in efforts to secure a dedicated and effective response from the federal government to this disease. Kim was one of Redbook magazine’s 2001 “Mothers and Shakers,” honored for her contributions to health care. She met her husband, Kofi, through former Board member Wilhelmina Jenkins (he is her son), so she now has family ties to CFIDS as well.
Dimitris Papanicolaou, MD, Rahway, NJ
Dimitris is an endocrinologist who has studied CFS at NIH and CDC (through Emory University). He now works for Merck in a research and development position. Although he is not able to continue his CFIDS research there, he remains very interested in the illness. Dimitris was chairman for two of the Association’s research symposia and was active in the provider education program while at Emory/CDC. He is a popular speaker at CFIDS patient conferences. His wife, Evi, is a cancer researcher at Weill Cornell School of Medicine. Dimitris began his service on the Board in 2005. He serves on the Association’s Scientific Advisory Committee and Long-Range Strategic Planning Committee.
Bob Raidt, River Fores, Illinois
Bob is a senior executive at Leo Burnett, an international consumer products advertising agency. Bob has extensive marketing experience as worldwide account head for McDonald’s. Bob has worked with the March of Dimes in Chicago and has several connections to CFS that motivate his interest in serving.
Brian Smith, Omaha, Nebraska
Brian became ill with a severe case of mono in March 1995 during soccer tryouts as a high school freshman. He tried to resume regular school/extracurricular activities after about six weeks, but never got better. After many visits to doctors, he was finally diagnosed with CFS in the spring of 1996. Although CFS caused him to miss much of high school, he graduated on time with honors and was able to attend college on and off, finally graduating from Arizona State University in 2004. He worked for the Vanguard Group until the fall of 2005, when he resigned due to a significant relapse. Later that year, after “recovering” from the relapse, Brian began taking science courses necessary for applying to medical school. In addition to caring for a seriously ill family member, Brian is doing coursework in genetics. Brian is a Lobby Day alumnus, having participated in the 2006 and 2007 events. He was elected to the Board in 2007 and serves on the Governance, and Development Committees.
Amy Squires, Alexandria, Virginia
Amy is a consultant with IBM’s public sector strategy and change practice. Her interest in CFS stems from her concern for her sister and close friends who have been debilitated to varying degrees by the illness. Before joining the Association’s Board in 2007, Amy participated in two Lobby Day events and provided pro bono support to the Association’s long-range planning efforts. Amy has a background in public administration and public policy, having worked at the Office of Management and Budget and as a consultant to numerous federal and state agencies. Elected to the Board in 2007 Amy looks forward to contributing to the Board’s work, in particular moving CFS further up on the public health agenda. She will chair the Association’s Long-Range Strategic Planning Committee and serves on the Nominating Committee.
Patrick Venetucci, Chicago, Illinois
Patrick is a senior executive at an advertising agency, Leo Burnett Worldwide, where he has held a number of management roles based in Chicago and Tokyo. He is currently executive vice president, global head of Human Resources and a board member of Leo Burnett Worldwide’s Global Leadership Committee. He holds his MBA in finance and marketing from the University of Chicago and is a strategic advisor to several entrepreneurial ventures. Patrick’s family has been affected by CFS since 1999. He and his family are committed to the discovery of a biomarker for CFS and ultimately a cure. Patrick serves on the Association’s Development and Long-Range Strategic Planning Committees.