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- Posted Thursday April 17, 2014
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 break out 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 includes
dodge-ball events, hat and iPod day, and other activities.
Donations also are being collected online at: http://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.
Muscles and neurological pathways don't work normally. The body has
a power failure.
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 and cancer 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 TGen and 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."
# # #
About FMM
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:
Jennifer Grizzle
770-409-1152
[email protected]
*
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]
