PHOENIX -- The Rex Griswold Foundation presented $50,000 to the Translational Genomics Research Institute (TGen) to further its scientific investigation into the cause and potential treatment of a rare nerve disorder known as Multiple System Atrophy (MSA).
The Foundation is named for Rex Griswold, a former vice president of sales for Nestlé Waters North America, who was a driving force at the company for more than two decades until he was suddenly struck by MSA.
"With TGen conducting the world's most in-depth genomic investigation into the causes of MSA, we feel confident of making progress in fighting this highly debilitating disease," said Tom Hipwell, president of the Rex Griswold Foundation. "This donation to TGen is the beginning of a long-term relationship."
MSA is a rare neurodegenerative disorder affecting fewer than five in every 100,000 people. It attacks the cerebellum, the area of the brain that controls motor movement, coordination, balance, equilibrium and muscle tone. The cause of MSA is unknown. 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.
In the case of Rex Griswold, he initially 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 tests, it was determined he had MSA.
"The biggest problem is there's no hope for the patient who's got it," Griswold has 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."
Now, TGen's research can provide hope for Rex Griswold and others afflicted by this puzzling 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 is using sequencing, coupled with specific family-based investigations, to uncover novel genetic associations with MSA.
"We are grateful to the Rex Griswold Foundation for its extraordinary contribution and for bringing hope to hundreds of families worldwide who are fighting MSA," said Michael Bassoff, president of the TGen Foundation. "Thanks to this critical financial support, TGen scientists can accelerate their efforts to understand and ultimately treat this awful disease."
Funding for the Rex Griswold Foundation has been raised through: the Dance for MSA Project; Meatball Mile for MSA Race in Danbury, Conn.; convenience-store events such as The Party at the NACS Show and store fund-raising efforts; requested donations from Nestlé Waters employees and Rex Griswold's friends and business contacts; and through the Foundation website.
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