Belnap Foundation ‘Penny War’ at Arizona school seeks better treatments for rare childhood disorders
TGen and Foundation for Mitochondrial Medicine research
will benefit from April 28-May 2 fundraising
PHOENIX, Ariz. — April 17, 2014 — A “Penny War” is about to breakout at Blue Ridge School in northeastern Arizona,where children are raising funds to fight rare disorders that affect some of their classmates.
Funds raised April 28-May 2 will go to the non-profit Belnap Foundation for Mitochondrial Disease, which will support research conducted by the Atlanta-based Foundation for Mitochondrial Medicine and by the Phoenix-based Translational Genomics Research Institute’s (TGen’s) Center for Rare Childhood Disorders.
“A penny isn’t worth much on its own. But when 700 students and several local businesses all come together for these children with rare diseases, this adds up. Every penny puts us one step closer to a cure,” said Newell Belnap, who with his wife, Becky, started The Belnap Foundation after three of their four children were affected by mitochondrial disease, which affects the mitochondria, or powerhouses, of our body’s cells.
Under the banner, “Your small change will help make BIG CHANGES in children with rare diseases,” students at Blue Ridge School in Pinetop-Lakeside, Ariz., are being joined by local businesses in collecting jars full of pennies.
The classroom with the highest “Penny War” points will share a pizza party and other prizes.The weeklong effort includesdodge-ball events, hat and iPod day, and other activities.
Donations also are being collected online at www.mitochondrialdiseases.org/pennywar/ or www.helptgen.org/raredisease. Proceeds will go to TGen’s Center for Rare Childhood Disorders and the Foundation for Mitochondrial Medicine, which are both dedicated to diagnosing and finding new treatments for patients with rare diseases.
Mitochondrial disease is an energy production problem. Almost all cells in the body have mitochondria, which are tiny “power plants” that produce the body’s essential energy. When someone has mitochondrial disease, their power plants don’t work properly and muscles and neurological pathways don’t work normally. The body can have a power failure similar to a “brown out” or a “black out.”
More than 30 million Americans are affected by one of the more than 7,000 rare diseases, most of which have no treatments, and many of which have not name; they are just a collection of symptoms.
“This is more than AIDS andcancer combined,” said Newell Belnap. “Nearly a third of children with these rare diseases will not live to see their first day of kindergarten.”
Among the Blue Ridge Schools, there are children diagnosed with Leigh’s disease, Cystic Fibrosis, Turner’s syndrome, mitochondrial disease, idiopathic basal ganglion calcification syndrome, and other disorders, many of them still undiagnosed.
Michael Bassoff, President of the TGen Foundation, said, “We are so grateful to the Belnap family, and all of the generous people of the Blue Ridge Unified School District, for their leadership in raising funds for TGen’s Center for Rare Childhood Disorders. The Belnap’s are truly an inspiration to our scientists and doctors to accelerate our research aimed at helping these very special children.”
Laura Stanley, Executive Director of the Foundation for Mitochondrial Medicine, said, “We are thrilled to partner with The Belnap Foundation and the community to raise funds and awareness for mitochondrial disease and other rare disease. Both TGenand FMM research efforts are working around the clock to solve the puzzles of rare diseases, including mitochondrial disease. Every person raising money truly helps us as we strive for the cures.”
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The Foundation for Mitochondrial Medicine’s mission is to support the development of the most promising research and treatments for the many forms of mitochondrial disease. Cures for mitochondrial diseases could impact cures for Autism, Alzheimer’s, Parkinson’s, and Lou Gehrig’s disease among others. The Foundation has recently partnered with the Alzheimer’s Drug Discovery Foundation and the Michael J. Fox Foundation to study mitochondrial conditions in Alzheimer’s and Parkinson’s disease respectively. For more information on FMM funded research such as functional MRI studies on cognitive fatigue and testing of new drug compounds, visit www.mitochondrialdiseases.org
Foundation Press Contact:
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