Casey Fero Memorial Fund – Blood & Tissue Bank

A message from Pat and Bruce Fero (September 2006)

We have a wonderful facility for a public access blood and tissue bank!  I heard “Yes” about a month ago.  I am confident that we have the best place possible – The Nevada CFS foundation. What follows is a brief look at the foundation history, goals and progress.    

“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”

 

Bruce and I are invited to attend this fundraiser and we will present the check  from the WISCONSIN CFS ASSOCIATION, INC. for the Blood and tissue bank}