- Posted Monday August 26, 2013
TGen's Center for Rare Childhood Disorders announced as official charity; team registrations begun for Jan. 19 race
PHOENIX, Ariz. - Aug. 26, 2013 - The
Translational Genomic Research Institute's (TGen) Center for Rare
Childhood Disorders had been selected as an official charity of the
2014 P.F. Chang's Rock 'n' Roll Arizona Marathon set for Jan.
Under TGen's banner, Rockin' for Rare Childhood Disorders, runners are encouraged to join teams and run on behalf of a child with a rare disorder.
"Many of the children that we help at TGen's Center for Rare Childhood Disorders are unable to walk or talk. They battle seizures, and some struggle daily just to eat or even breathe," said Robyn Nebrich, Assistant Development Director for the TGen Foundation, and coordinator for the event.
"As I talk to parents who are willing to share their child's story, and listen to the runners who plan to champion these children," Nebrich said, "I hear the same message: 'We run because they can't.' "
TGen's Center for Rare Childhood Disorders' mission is to address the needs of children suffering from rare diseases and disorders. Many of these children have no diagnosis. Often there is no name for the child's condition, just a collection of symptoms.
TGen uses advanced genetic sequencing technologies to track down the origins of disease, help establish diagnoses and recommend appropriate therapies.
One of the children that participants will run for is Mylee Grace of Phoenix. Mylee passed away at age 5 from a rare disease in June 2012. All of the funds raised by runners joining the team Mylee's Marathoners will go towards helping TGen researchers discover diagnosis and treatments for other children with rare disorders.
"Mylee was a courageous fighter who loved Elmo, Dora and dancing like a ballerina. She was our butterfly princess who stole everyone's heart with her giant smile. She taught us to never give up. That is why this year I am running for her and children like her," said Dave Eaton, Mylee's father.
To join a TGen team and run for a child, or become a corporate sponsor, please visit www.helptgen.org/run4kids or contact Robyn Nebrich at [email protected] or 602-343-8638.
"Runners this year not only have the opportunity to be a part of a great event," Nebrich said, "but they also can help make a difference in a child's life and support the important work being done at TGen's Center for Rare Childhood Disorders."
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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 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.
TGen Senior Science Writer