Association's Board of Directors
Providing leadership for the future
By Renee Brehio
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.
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 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
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.
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,
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.
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
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
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.
Prior to being diagnosed in 1986, John was president and CEO of
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.