September - October
Give thanks for
By Renee Brehio,
The reality of finding a cure for CFIDS
is that it takes funding.
Without adequate money for education, public policy and research, the road to the cure will be much longer
and more difficult. That is why fundraising is so crucial.
On behalf of all people suffering from
CFIDS, the Board of Directors and staff of The CFIDS Association of America wish to thank everyone who
has supported the ongoing work of the Association. Whether you've donated $5 or $50,000, organized a fundraiser
or written your own check, every gift is appreciated and essential to winning the battle to conquer CFIDS.
recently been inspired by the unique fundraising efforts of Ralph Perullo and Rich Carson, two individuals
giving unselfishly of their time and money to advance the CFIDS cause. Although we recognize that few
have the time, energy or resources to give in the way that Ralph and Rich have, we hope their stories
inspire you and offer a ray of hope in the long journey that is CFIDS.
a dream to make a difference
How can a major league sport help people with CFIDS? Just ask Ralph
Perullo, a successful Charlotte businessman with a passion for baseball. While he was growing up in New
Jersey, Perullo's father would drive him to New York to watch one of his great heroes, Joe DiMaggio, play.
He would watch the game and dream about being a major league player. Over the years, his fascination with
the sport and with DiMaggio did not diminish, and he lived out his dream by becoming a serious collector
of baseball memorabilia. In April, his life changed after he received a call from a New York dealer asking
if he wanted to enter a bid for all of the famous player's 21,000-piece memorabilia collection, containing
more than 10,000 items signed by DiMaggio himself. In that instant, Perullo saw an opportunity to do more
than acquire a huge treasure trove-he saw a way to raise money for a worthy cause, one he cares deeply
CFIDS has been a part of Perullo's life for the past three years. In 1996, his 14-year-old
daughter Andi was an A-student and a champion swimmer, traveling all over the country to compete. At 15,
she collapsed during a swim meet, experiencing muscle pain and profound fatigue. Six physicians later,
she was diagnosed with CFIDS. Andi is now on a strict diet and visits an acupuncturist and kinesthesiologist
regularly. She will be graduating high school next year and is preparing for college. Although she has
improved greatly, she has still not been able to return to her first love, swimming.
I found that there is a shocking lack of knowledge among physicians about CFIDS-we had a difficult time
even getting good information and referrals," says Perullo. "I realized that I needed
to do something to help raise awareness and make a real difference, so that other families do not have
to go through what we went through."
His plan was to buy the collection, keep a small part, and
sell off the rest, donating a portion of the proceeds to CFIDS research and education. But Perullo was
up against some stiff competition, including Christie's auction house and several other well-financed
bidders. How did he win out? By treating DiMaggio with respect. DiMaggio did not want his estate to be
viewed as trying to profit from his fame. Instead of breaking up the collection and selling off the pieces
himself, he willed that it be sold in its entirety to someone else who would then take on that task. Perullo
flew to Florida to meet with DiMaggio's lifelong attorney, who was in charge of the sale, and impressed
him with his love for the game and admiration for the legendary player. Perullo promised to honor Joe's
legacy, and the deal was struck.
Perullo pledged to donate 1% of all proceeds from the sale to
The CFIDS Association of America. The collection will be sold through eBay, an Internet auction site,
starting during the first game of the World Series in October. Experts say that the collection should
bring between two and eight million dollars, but the total could skyrocket if the Yankees play in the
series. Perullo conservatively estimates his gift to the Association at about $60,000.
"If I made
a contribution to research on cancer or AIDS, for which there is also no known cure, it would be a drop
in the bucket compared to what is already being spent," says Perullo. "With CFIDS, even a small amount
can go a long way, since so little attention is focused on it."
He is quick to point out that individuals
need to follow their conscience in terms of donations and feels fortunate that the sale of his collection
will allow him to do "a world of good." Ralph Perullo followed his dream, and by doing so, will help CFIDS
sufferers get a step closer to their dream of getting well.
View the Collectionwww.joedimaggioestate.com.
Items are already on sale.
Visit eBay’s site in early October for a preview of the auction.
A listing of Perullo’s collection, which includes bats, jerseys, balls and
lithographs, is at
man with a plan for the future
Planning and perseverance have always been Rich Carson's strengths.
A former stockbroker and investment specialist, he is also a person with CFIDS and a dedicated crusader
for finding a cure. Carson has raised more than $2.2 million so far on behalf of fellow patients.
he first fell ill in 1981, Carson found his life unraveling. His memory began to deteriorate, forcing
him to quit his job and move in with his parents. Instead of becoming discouraged, Carson became determined.
He began a mission to find the root cause of his illness. Turning what energy he had to playing detective,
he poured over published studies and began calling prominent researchers and fellow patients in search
Raising money to explore new research avenues became another major objective. Carson
established connections with the entertainment industry to get results. He was responsible for organizing
the first major celebrity fundraiser for CFIDS, which attracted many well-known names in Hollywood, research
and government and brought in more than $250,000.
Along the way, Carson realized that research
alone is not enough. Individuals with CFIDS need more immediate help, including treatment resources and
options. To address these needs, he began one of the first CFIDS support groups in the country.
1989 he founded the CFIDS and Fibromyalgia Health Resource as a way to offer nutritional supplements to
the CFIDS community. The Health Resource, which has grown to more than 25,000 members, also serves as
an information clearinghouse. A free newsletter, HEALTHwatch, is distributed to members along
with a bi-weekly E-mail news bulletin. More information about the Health Resource is available on their
"This is not a commercial
venture that will contribute to personal
wealth, but a way to support those who have this terrible illness," says Carson. "It exists for the benefit
of patients, with more than half of our profits dedicated to research and advocacy-a track record I believe
is unsurpassed in private industry."
On the research front, Carson has become particularly interested
in human herpesvirus 6 (HHV6), which can infect the central nervous system. Recent studies have found
the virus in an active, replicating form in CFIDS and multiple sclerosis patients. Most people with a
normal immune system are not affected by the virus, but it can be very serious in individuals whose immune
systems are suppressed, such as chemotherapy or transplant patients. The Health Resource has persuaded
several top researchers to explore the possible role HHV6 may play in CFIDS, and is currently funding
a pilot research program.
The Health Resource also has made very generous donations
to The CFIDS Association and numerous researchers and support groups. In keeping with that tradition,
Carson has pledged 100% of the profits from purchases made by Association members in response to a special
offer advertised in this issue of the Chronicle.
Carson encourages fellow sufferers to
make a personal investment in their own health. Even if it isn't monetary, he feels everyone needs to
make the commitment to taking charge of their future.
"The happiest day of my life will be when
my company goes out of business because a cure has been found," he says. "That is the goal that I am working
toward, the goal that everyone with this disease should be working toward."
Rich Carson has been
a determined, dedicated and successful fundraiser for CFIDS. And if everything goes according to plan,
he will find a way to beat it.