Casey Fero ME - CFS Tissue and Blood Bank
On July 4, 2005, at the age of 23, Casey Fero died in his sleep. In September, a Madison forensic pathologist determined that Casey had Myocarditis, that is, viral infection of the heart muscle. In addition, he had fibrosis which is scar tissue from past infections. Some medical researchers suggest that there is a link between cardiac problems and chronic fatigue syndrome (CFS).
As a lasting tribute to Casey, the Fero family, the Wisconsin Chronic Fatigue Syndrome Association, Inc., and Mothers against Myalgic Encephalomyelitis, Inc. (MAME) will create the first universal access blood and tissue bank for ME-CFS
Sound medical research is the key to understanding the cause of these disorders and developing treatments that can help patients manage daily living. Many recognized illnesses, such as Alzheimer’s, were poorly understood before the creation of tissue and blood banks. Precious gifts of tissue and blood benefit all individuals and families living with illness.
A universal access specimen bank means that any scientist can ask for samples provided that their study meets careful guidelines. The Institute for NeuroImmune Disorders which will be built at the University of Nevada Reno campus, will have a research, clinical and training facility to include a Tissue repository.
Right now, we are fund raising to buy an additional freezer for storage at the facility. The cost is about $10,000. Will you help us? Your contribution is tax deductible through the Wisconsin ME/CFS Association, Federal ID number 39 -1614649. You can send a check to the association at the address listed below. Please specify CASEY’S FUND.
Wisconsin ME/CFS Association
On September 15,2006, Bruce and I were invited to attend a fundraiser for the Neuroimmune Disorders Institute in Reno. Our goal was to deliver the check for $11,700 for the bio-bank or blood and tissue repository, a fund we set up as a tribute to Casey Fero who died on July 4, 2005. The event was fabulous in many ways. Most touching was the huge 24 by 24 picture of Casey Fero mounted on a easel near the high stakes poker table. (Casey would have liked that.) Other pictures of patients were set around the huge ballroom. Interviews of these patients, plus Dr. Dan Peterson and Annette Whittemore, one of the founders of the RENO project, were made into a video and shown during the event. It was simple and beautifully done.
Casey's Day (word doc) 7/08