“We are the families of individuals with a
devastating illness called Chronic Fatigue and Immune Dysfunction
Syndrome that is estimated to cause disease in over 800,000
individuals in the United States and many hundreds of thousands of
others around the world. Until very recently there were no
treatments available to sufferers of CFS that could bring
significant relief.
This became our personal battle, sixteen years
ago, when our daughter, at the age of 12, became severely ill and
was subsequently diagnosed with CFS. Our daughter’s physician, Dr.
Daniel Peterson, an expert in CFS who first alerted the CDC to the
serious nature of this new disease, recently observed that a subset
of his CFS patients with hypersomnia and neurocognitive problems
also have a virus, now known as HHV-6A, in their spinal fluid. He
believes Human Herpes 6A to be an important factor in the illness
that plagues our daughter and so many more like her.
At his suggestion we started a foundation to
support scientific research into this virus and the many diseases it
is now associated with such as MS, epilepsy and CFS. Thus the HHV-6
Foundation was formed in 2004 as a non-profit entity to encourage
scientific exchange among scientists and to provide pilot grants for
promising scientific and clinical research. Since that time the
foundation has sponsored 4 major research grants and five smaller
grants awarded to scientists who are searching for answers to the
mysteries surrounding HHV-6. An international medical conference
was produced in May of 2006, which attracted over one hundred and
sixty five scientists from around the world. As a result of that
meeting, scientists from a variety of fields of medicine formed new
partnerships promising to continue the search for answers.
In 2005, a group of dedicated physicians
and advocates for patients with Chronic Fatigue and Immune
Dysfunction Syndrome conceived a plan to build a medical institute
to offer quality care for these patients. The Nevada State
Legislature agreed to support the building of this institute in
partnership with the University of Nevada’s new Biomedical Research
Facility and the Nevada Cancer Institute. Thus a national CFS
Institute was born.
Nevada’s institute will serve to
integrate three comprehensive centers: a clinical facility or Center
of Excellence for patient care, a basic research center and
educational center. The COE will offer the latest in complex
diagnostics to reveal the underlying causes of immune dysregulation
while also determining protocols of treatment for evidenced based
medicine. The educational component will instruct medical students
and current physicians in all aspects of this illness to ensure that
the highest quality of patient care continues for years to come. The
educational center will also produce seminars and collaborative
think tanks to bring innovative solutions to this field of medicine.
Finally, the research component will support basic and clinical
research at the University of Nevada’s Biomedical Center with other
research institutions around the world, to attain our most important
goals of an effective cure for current patients and a vaccine to
prevent future suffering.
This September 15th, we are
sponsoring a second fundraiser to raise funds to build a medical
Institute and to support the work of the HHV-6 Foundation and the
Nevada CFS Foundation. With your generous contributions we will
bring hope for a better tomorrow to all of our family members and
friends who suffer from CFS
With our deepest
gratitude,
Annette and Harvey
Whittemore” |