Meet the Association's Board of Directors
Providing leadership for the future

By Renee Brehio

The CFIDS Association's Board of Directors provides leadership for the Association and the chronic fatigue and immune dysfunction syndrome (CFIDS) community as a whole, helps define the Association's mission, sets policy and provides oversight.

Each Board member brings his or her own perspective to bear on the Association's work. These individuals are carefully chosen to represent a wide range of experiences and talents---the 1999-2000 Board is composed of patients and healthy professionals who have conquered the fields of business, medicine, education, science, law, media and marketing. Together, they will help us conquer CFIDS.

Priscilla deLeon.
Priscilla was employed as a radiologic technologist until she was forced to leave her job in 1988 because of CFIDS. Since January 1988, she has served as a local councilwoman and has used her knowledge of the government process to bring about increased awareness of CFIDS. She co-founded the Chronic Fatigue Syndrome Association of the Lehigh Valley and serves on the CFIDS Association's CFIDS Support Network Advisory Committee (CSNAC). 

Marc Iverson (Chairman and Founder).
Marc pursued successful careers in public accounting, finance and management consulting. He became ill in 1979 but was not diagnosed with CFIDS until eight years later. He subsequently co-founded The CFIDS Association of Charlotte. Through his vision and dedication to the needs of the patient community, Marc has led the professional staff to build the organization from a local support group into the nation's leading charitable organization dedicated to conquering CFIDS.

Wilhelmina Jenkins.
Once a physicist and physics teacher, Wilhelmina was disabled by CFIDS 17 years ago. At the age of 14, her daughter Kamilah also fell ill. A joint appearance on the Oprah Winfrey Show in 1998 brought CFIDS to the attention of millions of viewers. Wilhelmina has served on numerous Board committees and last year became the first person to hold the Vice Chairman office. However, a severe relapse has caused her to take a leave of absence from the Board this year.

K. Kimberly Kenney.
As President & CEO of The CFIDS Association of America, Kim has represented the patient community for nine years before Congress, government agencies, the media and the medical community. She is one of seven members of the public appointed by Secretary Shalala to the Department of Health and Human Services CFS Coordinating Committee (CFSCC) and has participated in numerous collaborative efforts between public health officials, researchers, physicians and patient advocates.

Karen Lang.
Karen understands the losses brought about by CFIDS as both a patient and mother of a young person with the illness. After her son Calen became ill, she quickly became an expert in federal, state and local educational law as it pertains to students with disabilities. Karen has advocated for rapid access to promising new therapies and has participated in almost all of the Association's Lobby Days. She is on leave of absence from the Board due to severe illness.

Charles McBrayer Sasser, JD.
"Mac" is a well-known disability attorney practicing in North Carolina who has successfully represented CFIDS patients in Social Security Administration and private insurer disability cases. He is a former president of the National Organization of Social Security Claimants Representatives and has lectured and published extensively on disability law.

Jane Perlmutter (Vice-Chair).
Jane was diagnosed with CFIDS in 1991 when advocacy was not regarded as a crucial issue in the CFIDS community. So she formed the CFIDS Activation Network (CAN), a local and national advocacy organization, and eventually began working with The CFIDS Association to lobby government for increased research dollars and a voice in directing research. She has testified before Congress and worked to get all persons with CFIDS involved in advocacy.

Patti Schmidt (Secretary).
Patti has been ill with CFIDS since 1979. She served as leader of the Montgomery County CFIDS Support Group and co-founded the Greater Philadelphia CFIDS Alliance. Patti was an editor for Gannett Newspapers before becoming disabled, and still writes for The CFIDS Chronicle. She publishes a private, e-mail based CFIDS information resource, CFIDSINFO, and was instrumental in convincing the Oprah Winfrey Show to feature CFIDS patients.

Jonathan Sterling (Treasurer).
Jon was stricken with CFIDS in 1989 and had to leave his position as principal of a junior high school. He served four years as president of the New Jersey Chronic Fatigue Syndrome Association, Inc. (NJCFSA), and is proud that under his leadership. NJCFSA passed a bill in the New Jersey legislature allocating $95,000 to create a manual for physicians on the care of CFIDS patients. Jon was recently appointed to serve as a patient representative to the CFSCC.

John Trussler.
Prior to being diagnosed in 1986, John was president and CEO of a medical center. He was one of the first 10 patients in the world with CFIDS to be given the experimental drug Ampligen, but was a non-responder. John has been interviewed by the ABC show "Nightline" about his experience. He co-founded a local support group and is a member of the CFIDS Support Network of America.

Frank Wrenn, MBA.
Formerly the Association's Director of Communications and Development, Frank Wrenn now works in Atlanta as a marketing consultant specializing in consumer trends. During his tenure at the Association, he participated in television, radio and newspaper interviews to promote CFIDS awareness and helped raise money for education, advocacy and research.

Renee Brehio is Director of Communications for The CFIDS Association of America.