New York, NY – November 10, 2006 – The Spinal Muscular Atrophy (SMA) Foundation announced today that it has received the 2006 Advocacy Award of Merit from the Child Neurology Foundation (CNF). The award was presented to the SMA Foundation during the Annual Meeting of the Child Neurology Society in Pittsburgh on October 20. Founded in 2003 to accelerate the development of a treatment for SMA, which afflicts over 25,000 people in the U.S. and has no known treatment, the SMA Foundation works with leaders in research, industry and government to raise awareness, support and research investment.
Darryl De Vivo, M.D., Professor of Neurology at Columbia University Medical Center and a Past-President of the Child Neurology Society, noted, “The SMA Foundation’s work on behalf of children with SMA on all fronts including academic, governmental and biotechnical initiatives has served to heighten awareness of SMA in particular and Motor Neuron diseases in general. The increase in momentum we have observed since 2003 is largely attributable to the tireless, selfless efforts of founders Loren Eng and Dinakar Singh and the colleagues and advisors they have recruited to this effort.”
The award was given to both the SMA Foundation and Families of SMA to recognize “the wonderful work of both organizations and their outstanding advocacy for patients, families, and caregivers coping with SMA,” said Alan K. Percy, Past President of the CNF and the Child Neurology Society. “The organizations make unique contributions to the field and together represent the spectrum of healthcare philanthropy in the U.S. today.”
In accepting the award on behalf of the Foundation, Executive Director Cynthia Joyce thanked Dr. De Vivo and the many child neurology specialists who have cared for children with SMA and advised foundations over the years. “In making this award, the Child Neurology Foundation has highlighted an important point for all parents of children with SMA – they are not in this alone. Working together advocates, researchers, Child Neurologists and multidisciplinary care teams are collectively making care for our kids better and making progress towards a real treatment for SMA.”
About Spinal Muscular Atrophy
Spinal muscular atrophy is a genetic, motor neuron disease caused by degeneration of spinal cord neurons that leads to progressive muscle weakness, atrophy and inability to walk or sit and breathing difficulties. Children afflicted with this disease suffer a premature death due to respiratory failure, generally before reaching two years of age. The SMA Foundation estimates that currently over 50,000 people suffer from SMA in the U.S., Europe and Japan and that a conservative annual market potential for an SMA treatment could exceed $500 million.
About the Spinal Muscular Atrophy Foundation
The Spinal Muscular Atrophy Foundation was founded in 2003 as a nonprofit organization dedicated to accelerating progress towards a treatment and cure for spinal muscular atrophy through targeted funding of clinical research and novel drug development efforts. Over the last three years, the Foundation has pledged over $30 million in sponsored research agreements. The Foundation is also committed to raising awareness and generating support for increased research efforts in SMA among the leaders of industry and government.
About the Child Neurology Foundation
The Child Neurology Foundation is the outreach and philanthropic arm of the Child Neurology Society, providing information, educational opportunities, and advocacy for child neurologists and other medical professionals – and for patients, parents, and member groups dealing with an array of neurologic conditions. The CNF Advocacy Award of Merit recognizes patient support organizations making outstanding achievements on behalf of patients and families with neurologic and developmental disorders. To learn more about the CNF Advocacy Award of Merit, please visit www.childneurologyfoundation.org/main_awards_4.cfm . For more information on the Child Neurology Foundation, please visit www.childneurologyfoundation.org or call (651) 645-4244.