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- Posted Monday August 26, 2013
Runners at P.F. Chang's Rock 'n' Roll Arizona Marathon champion children helped by TGen
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.
19.
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."
# # #
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]
