|
 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).
Casey was
diagnosed with CFS at age 9 and again at age
15. It caused him
to feel weak, unable to think, and exhausted. He was plagued
with headaches, and had major sleep disorder among a list of
daily symptoms. Casey persevered and did not want people to
know his condition.
Early on, he knew that medical help was
unavailable and furthermore,
he was met with disbelief in the
school and in the doctor’s office.
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
patients.
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
747 Lois
Drive
Sun
Prairie, WI 53590
You can also
donate online at
www.wicfs-me.org. These
contributions are dedicated to Casey and will not be used for
any other purpose.
Printer friendly flyer
Casey Fero Memorial Fund - Repository Update
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.
They kept moving Casey’s picture. At the end of the event,
we found Casey’s picture in the entryway, the last thing for
someone to see upon leaving the fundraiser. That was hard as
if he belonged to others, strangers and friends. But, it is
what it is.
Casey's Day
(word doc) 7/08
|
