Loren Eng Testifies Before Congress For Support and Funding of Spinal Muscular Atrophy Research
Loren Eng, Founder and President of the Spinal Muscular Atrophy Foundation, testified Tuesday, April 27th on Capitol Hill before the House Labor, Health, Human Services and Education Appropriations Subcommittee. Eng urged Congress for increased funding and support for the National Institute of Health (NIH) research programs on Spinal Muscular Atrophy (SMA), the leading genetic killer of infants and toddlers.
New York, NY (PRWEB) April 29, 2004 -– Loren Eng, Founder and President of
the Spinal Muscular Atrophy Foundation, testified Tuesday, April 27th on Capitol
Hill before the House Labor, Health, Human Services and Education Appropriations
Subcommittee. Eng urged Congress for increased funding and support for the
National Institute of Health (NIH) research programs on Spinal Muscular Atrophy
(SMA), the leading genetic killer of infants and toddlers.
Speaking on
behalf of the SMA Coalition, which is comprised of non-profit groups from across
the country, Eng testified that SMA has been transformed from a poorly
understood disease, to one that is on the verge of treatment.
“Given the
tremendous possibilities that lie before us, it is critical that government
invest funding to match the work of charities and ensure that the NIH receives
sufficient funding and support to complete the development of a treatment,” said
Eng.
Spinal Muscular Atrophy is a genetic, motor neuron disease
characterized by the wasting away of skeletal muscles. More than 25,000
Americans have the disease. Up to 1,000 new babies – an estimated one in every
6,000 live births – are afflicted with SMA each year. Over 50% of patients with
SMA die before the age of two. Currently there are no treatments.
Eng,
who’s daughter suffers from the disease, stated in her testimony that SMA has
the potential to be one of the most remarkable medical success stories in recent
history. In addition to having identified the gene that causes SMA, a number of
compounds, which appear to treat the debilitating disease, have also been
identified. Furthermore, the first clinical trials are in progress and promising
treatments have been approved by the Food and Drug Administration and could be
used in the near term future. Eng stated that there is a “realistic expectation
of a treatment for SMA within four years.”
The Spinal Muscular Atrophy
Foundation has committed $20 million to support SMA research and find a cure for
this disease, which is as common as ALS, Cystic Fibrosis and Muscular Dystrophy.
Congress has been asked by the Foundation to support research by matching
funding given by SMA organizations.
About the SMA Foundation
The SMA
Foundation is a nonprofit organization founded in 2003 dedicated to finding a
treatment and potential cure for Spinal Muscular Atrophy (SMA) through funding
the implementation and advancement of clinical research into the disease. In
addition, the Foundation is committed to raising awareness, education and
increased federal funding and support. For more information on the Spinal
Muscular Atrophy Foundation, visit www.smafoundation.org or
call (646) 253-7100.
Media Contact:
Bryan deCastro, (631)
495-9177
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Cynthia Joyce, (646)
253-7100
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Source : http://www.prweb.com/releases/2004/4/prweb122444.htm