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Loren Eng Testifies Before Congress For Support and Funding of Spinal Muscular Atrophy Research
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Added: 04/29/2004
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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.
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
bdecastr@optonline.net
Cynthia Joyce, (646) 253-7100
cjoyce@smafoundation.org |
Article Pages: 1
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