- Posted Friday April 29, 2016
White Mountain area schools hold week-long 'Penny Wars' to help children with rare genetic disorders
LAKESIDE, Ariz. - April 29, 2016 - Who says
pennies don't matter. The student councils at northeast Arizona's
Blue Ridge and Snowflake school districts are sponsoring a
Penny Wars fundraiser May 2-6 for the Belnap Foundation,
which supports research for children with rare genetic
Last year's Penny Wars drew so much enthusiastic support that some local banks ran short of copper coins. This year, they're stocking up.
White Mountain area residents Newell and Becky Belnap, whose children attend Blue Ridge schools, created the Belnap Foundation, which supports research and treatment at the Center for Rare Childhood Disorders (C4RCD), an initiative of the Phoenix-based non-profit Translational Genomics Research Institute (TGen).
Details about TGen's program for children can be found at www.c4rcd.org.
"This fundraiser will raise money for research, increase awareness, and honor the students who fight a daily battle with a rare disease," said Newell Belnap, President and Co-Founder of the Belnap Foundation.
Two of Newell and Becky's four children - Sydney and Seth - have a rare mutation, identified by TGen, that causes a form of mitochondrial disease, which affects the powerhouse of the body's cells.
The more than 7,000 identified rare diseases affect 1 in 10 Americans, more than AIDS and cancer combined. The National Institutes of Health (NIH) estimates that half of those affected by rare diseases are children, making rare diseases one of the most deadly and debilitating disorders for children worldwide.
Thirty percent of children with a rare disease will not live to see their first day of kindergarten. These diseases are significantly underfunded, often leaving patients with no options for treatment.
"There are many children and adults living in our community that suffer from these types of diseases," Newell Belnap said. "We are asking businesses to actively participate in these fundraising events."
Suggested activities are: tax-deductible donations, food or prize donations, including prizes to students for fundraising and awareness efforts; providing containers so customers can donate their change; or dedicating a percentage of sales.
For additional information about how to help, please contact Newell Belnap at 928-242-3432, Danae Cessna at 928-358-3749, or Nate Updike at 602-214-2806. Please also visit the Belnap Foundation website at: http://belnapfoundation.org/.
Along with the Belnap family, TGen has sequenced and analyzed the genomes of more than 300 children, providing diagnosis for their families and physicians in nearly 40 percent, almost triple the national average for such cases.
"We are grateful to the Belnap family and to all of the wonderful people of the White Mountains area who support this incredibly heartwarming event," said TGen Foundation President Michael Bassoff.
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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