Leadership: Board of Directors

Jennifer M. Spotila, JD, King of Prussia, Penn.
Chairman
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.

Chronic Fatigue Syndrome Advisory Committee meeting testimony May 6,2008

Chronicle articles by and about Jennie:
“Welcome to the CFS Blogosphere”
“Satellite Media Tour Contributes to Coverage”

“NBC Nightly News” story featuring Jennie:
“Chronic fatigue is a real illness, government says”

CFIDSLink article
"Defining Moments" Reaching the Corner

Lynn Royster, PhD, Chicago, Ill.
Vice Chairman
Lynn is a member of the District of Columbia, Texas state, New Jersey state and Illinois state Bar Associations. Currently a DePaul University professor, her interests include equal educational opportunities for college students with chronic illnesses such as CFS. She is the developer and Director of the Chronic Illness Initiative at DePaul University’s School for New Learning. Her adult son, Patrick, has suffered from CFS for more than two decades. Lynn joined the Board in 2004 and led the Association’s Long-Range Strategic Planning Committee from 2005-2006. As Vice Chairman, Lynn chairs the Professional Staff Recruitment and Compensation Committee and serves on several other standing committees of the board.

Chronicle article by Lynn about her son’s illness and its impact on the family:
“A Mother’s Story” 

Media articles about Lynn:
“DePaul may be first school with program that can help”  
“Helping Hands” 
“Reaching Students with Chronic Illness” 

Susan L. Jacobs, Esq., Providence, RI
Secretary
Susan is a partner at the general practice law firm of Volterra Goldberg & Jacobs in Massachusetts and is actively involved in her community. She is a past president of the Attleboro Area Bar Association, is the current Vice-President of the Bristol County Bar Association, and has served on the boards of several other organizations. Susan’s initial interest in CFIDS stemmed from her friendship with and concern for her college roommate. Since joining the Board in 2004 she has participated in the Association’s Oscar Night Benefit, lobby day and numerous committee activities, developing a passion for the Association’s mission. Susan served as chairman of the Board from 2005-2007 and currently chairs the Governance Committee.

Message to Members from the fall 2007 CFIDS Chronicle

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.

Lucinda Bateman, MD, Salt Lake City, Utah
Cindy is an internal medicine physician who has limited her practice to the diagnosis and care of CFS and FM patients. She founded the Organization for Fatigue and Fibromyalgia Education and Research (OFFER), a regional non-profit that runs annual conferences for health care professionals and patients. She has done an outstanding job cultivating interest in CFS and FM among local health care providers and she contributes to research on CFS by providing well-characterized patients for various clinical and treatment studies. Cindy also serves on the Board of the International Association for Chronic Fatigue Syndrome/M.E. (IACFS/ME) and the federal CFS Advisory Committee (CFSAC). She is a member of the CFIDS Association's Nominating and Scientific Advisory Committees.

Chronicle article about Cindy and OFFER:
“Organizations Making History”

Story from the American College of Physicians Observer about CFS, featuring Cindy:
“Putting chronic fatigue syndrome’s myths to bed” 

Katrina Berne, PhD, Happy Jack, Ariz.
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.

Interview with Trina on WUNC radio http://thestory.org/archive/the_story_197_The_Invisible_Illness.mp3/view

Rod Converse, Pringle, SD
Rod’s wife, Avis, has had CFIDS for more than 10 years. Throughout that time, Rod has supported her in every way, educating himself on every aspect of the illness, becoming familiar with the research and following the dynamics of the CFIDS community. He has attended many of the IACFS/ME research conferences and other patient meetings. Rod owns Northern States Restaurants and is a partner in Close-Converse Commercial and Preferred Properties, focusing on commercial and real estate development in north-central Minnesota. Rod serves on the Board of Directors of the Brainerd Lakes Area Community Foundation and joined the CFIDS Association’s Board in November 2005. He serves on the Association's Development and Long-Range Strategic Planning Committees.

Adam Lesser, Los Angeles, California
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.

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.

“From the Desk of Kim McCleary” monthly feature from CFIDSLink

Nov. 3, 2006 press conference moderated by Kim

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.

Jane Perlmutter, New York, NY 
Jane was diagnosed with CFIDS in 1991, before advocacy was recognized as a crucial issue in the CFIDS community. To help advance CFIDS public policy efforts she formed the CFIDS Activation Network (CAN), a local and national advocacy organization, and also worked with The CFIDS Association to lobby the government for increased research funds and a voice in directing research priorities. Jane has testified before Congress and has participated in many of the Association’s 15 annual lobby day events. Elected to the Board in 1996, Jane is the most senior member of the Board and served as treasurer and chairman of the Nominating Committee 2004-2006 and serves as a member of that committee at present.

Chronicle article about Jane:
"Time Capsule . . . Making Advocacy Easy For Others"

Mark Peterson, DDS, Chesapeake, Vir.
Mark is a disabled orthodontist who has suffered with CFIDS since the early 1990s. Mark was featured in the Association’s Snapshots of CFIDS publication and has participated in Lobby Day and other Association events with his wife, Frances, and parents Dr. and Mrs. Thomas Peterson. He has a keen interest in the Association’s public policy program and fundraising activities. Mark joined the Board in 2003 and has served on the Governance, Long-Range Strategic Planning and Development Committees.

 Profile of Mark from “Snapshots of CFIDS” publication:

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.

I'm Brian Smith, and I have CFS

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.