Rex Griswold, Vice President of Sales for Nestl- 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 Nestl-'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 Nestl- 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."
Nestl-'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."
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