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- Posted Friday August 30, 2013
CARRE Foundation selects TGen for unprecedented research into the causes of Multiple System Atrophy (MSA)
'Quest to Cure MSA in Honor of Rex Griswold' drives in-depth genomic investigation of rare nerve disorder
PHOENIX, Ariz. - Aug. 30, 2013 - Rex Griswold,
Vice President of Sales for Nestlé Waters North America, was a
driving force at the company for more than two decades until
Multiple System Atrophy (MSA) suddenly struck him.
Initially, he noticed his right side was not in sync with his
left. He had problems walking, his handwriting deteriorated, and
his speech became slurred. Doctors thought at first he might have
had a stroke. After many, many other tests, it was determined he
had MSA.
"The biggest problem is there's no hope for the patient who's got
it," Griswold said. "No matter how many doctors you go to, they all
say the same thing: there is no cure for MSA. There are not enough
people with the disease, so there's no research being done. There's
hardly anything to hang on to."
Under the banner, "Quest to Cure MSA in honor of Rex Griswold,"
the Translational Genomics Research Institute (TGen)
today was tapped to conduct the world's most in-depth genomic
investigation into the causes of MSA.
The project is funded by a $100,000 grant from the CARRE
(Charitable Alliance of Restaurant and Retail Executives)
Foundation, part of CSP Business Media. MSA was selected as the
beneficiary of a 2013 CARRE Foundation fundraising event in honor
of Nestlé's Rex Griswold.
"After meeting with TGen senior leadership and faculty, we knew
they were the right scientific institute to conduct this
groundbreaking research," said David Jobe, President, CSP Business
Media Leadership Conferences. "We believe this is only the
beginning and that, with the help and support of the greater
community, we are on our way toward discovering the causes of this
debilitating disease."
Kay Segal, Senior Vice President of CSP Business Media, agreed:
"We are confident-based on TGen's leadership, faculty and
state-of-the-art genomic capabilities-that we have found an
exceptional partner in this battle to find a cure."
Kim E. Jeffery, Chairman of Nestlé Waters North America, who
worked with CARRE to assemble $100,000 for the study, said that
like many rare disorders, there has been limited funding and few
studies of MSA. "We and the other supporters of this new TGen-led
research hope to turn that around and make real progress in helping
those whose lives have been shattered by this disease."
Nestlé's support of TGen was prompted, in large part, by a desire
to help Rex Griswold.
"Rex has been a vital force for our company for more than two
decades, and it seems inconceivable that he might be slowed by such
a rare and puzzling disorder," Jeffery said. "Despite his
diagnosis, Rex continues to perform in a positive, determined way,
and his fighting spirit is coming through."
MSA is rare, affecting fewer than 5 in every 100,000. It attacks
the cerebellum, the area of the hindbrain that controls motor
movement, coordination, balance, equilibrium and muscle tone. The
cause of MSA is unknown, but the typical age of onset is in the
late 50s. Also called Shy-Drager Syndrome, there is no cure and not
even a treatment that can slow its progression.
Now, TGen's research can provide hope for Rex Griswold and others
afflicted by this mysterious disease that cuts down adults in their
prime.
TGen's technologically advanced whole genome sequencing - spelling
out an individual's genetic code - should provide a comprehensive
look at the genetic changes that might cause MSA. TGen proposes to
use whole genome sequencing coupled with specific family-based
investigations to uncover novel genetic associations with
MSA.
"TGen's sharper tools and simpler methods will allow an in-depth
analysis of the MSA genome," said Dr. Jeffrey Trent, TGen President
and Research Director. "We seek to apply these tools in a defined
patient population in hopes of providing information to scientists
and physicians so we can benefit those patients who need our help
today."
As its name implies, MSA is a progressive neurodegenerative
disease with a combination of potential symptoms, including loss of
muscular coordination and movement, low blood pressure, dizziness,
impotence, bladder control, and failure of other body
functions.
As in the case of Rex Griswold, individuals who develop MSA will
feel perfectly fine one day, and then suddenly be struck with a
cascade of catastrophic symptoms.
"I cannot begin to describe how hopeful I am to have an
organization like TGen commit to doing research into the causes of
MSA," Griswold said. "This gives promise to the many individuals
like me who have been living without hope."
For more, please see a video featuring Rex Griswold at: http://cspdigitals.com/msa/msa_video.html.
# # #
About Nestlé Waters North America
With 36 years of experience providing refreshment in the bottled
water segment, Nestlé Waters North America is the nation's leading
bottled water company. The company produces six regional natural
spring water brands in the U.S., distributes three international
brands of water, produces Nestle® Pure Life®, its nationally
distributed purified bottled water, and most recently, added
ready-to-drink iced teas. The company's dedication to quality
products, employee development, bringing shared value to
communities, and its commitment to environmental stewardship,
especially in the areas of water use, energy and packaging, has led
Nestlé Waters North America to be third largest non-alcoholic
beverage company by volume in the U.S.
About CARRE
The CARRE Foundation's purpose is to provide leadership through
charitable giving while building stronger relationships and bonds
within the business conference community. Primary support is given
to non-profit organizations, including those that assist others
suffering from disability, disease, illness and other hardships, as
well as organizations that promote the virtues of leadership.
About TGen
Translational Genomics Research Institute (TGen) is a Phoenix,
Arizona-based non-profit organization dedicated to conducting
groundbreaking research with life changing results. TGen is focused
on helping patients with cancer, neurological disorders and
diabetes, through cutting edge translational research (the process
of rapidly moving research towards patient benefit). TGen
physicians and scientists work to unravel the genetic components of
both common and rare complex diseases in adults and children.
Working with collaborators in the scientific and medical
communities literally worldwide, TGen makes a substantial
contribution to help our patients through efficiency and
effectiveness of the translational process. For more information,
visit:www.tgen.org.
Press Contact:
Steve Yozwiak
TGen Senior Science Writer
602-343-8704
[email protected]