- Posted Thursday April 21, 2016
TGen using advanced genomic sequencing to discover the cause of Multiple System Atrophy; nerve disorder strikes victims in their prime
PHOENIX, Ariz. - April 21, 2016 - The Rex
Griswold Foundation today announced the presentation of $50,000 to
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 rare neurodegenerative disorder, affecting fewer than 5 in every 100,000. 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, 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.
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 their 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.; requested donations from Nestlé Waters employees and Rex Griswold's friends and business contacts; and through the Foundation website. For more information, please visit: www.rexgriswoldfoundation.org.
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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 neurological disorders, cancer, 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. Follow TGen onFacebook,LinkedInandTwitter @TGen.
TGen Senior Science Writer
About the Rex Griswold Foundation
In 2014, a group of colleagues and friends from Nestlé Waters North America joined together to form the Rex Griswold Foundation, a nonprofit organization with the goal of speeding diagnosis, developing treatments for symptoms, and ultimately curing MSA. Little is known about this disorder, and even less research has been done to study its devastating effects. They are dedicated to raising money for research to learn how to put an end to this terrible disease on behalf of their dear friend. Rex always thinks beyond himself, so if his suffering can help ease someone else's - even by a little bit - he's willing to do anything he can. His spirit is at the heart of the foundation and will guide this journey to find a cure for MSA. Please visit: www.rexgriswoldfoundation.org.