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antiquity
06-21-2002, 08:53 AM
Families of SMA Partners With NINDS to Fund Drug Testing


Chicago-Area Organization Joins With Federal Government and Other Foundations

To Help Find Drugs That May Treat Neurodegenerative Diseases

LIBERTYVILLE, Ill., June 21 /PRNewswire/ -- At its International Scientific and Family Conference today, Families of Spinal Muscular Atrophy is announcing that it will join with the National Institute of Neurological Disorders and Stroke (NINDS) to encourage testing of promising drugs that may help find a treatment or cure for Spinal Muscular Atrophy and other neurodegenerative diseases

SMA is a group of inherited and often fatal diseases that destroys nerves controlling voluntary muscle movement. SMA can strike anyone of any age, race or gender. SMA is one of the most prevalent genetic disorders and affects all racial and ethnic groups. One in every 40 people carries the gene for the disease. The child of two carriers has a one in four chance of developing SMA. 21,929 children worldwide are born with SMA and each year 1/2 will die before their second birthday. There is no cure for SMA.

According to NINDS, "The goal of this initiative is to identify promising candidates broadly across neurodegeneration, coordinate their testing within one program, and to compare the results side by side to move the most promising compounds to the clinic or to models of other neurodegenerative diseases."

The research will be structured in two phases. Phase I will test compounds in disease models. Phase II will test promising drugs in the most clinically predictive way possible and will take drugs that look promising for one disease and test them for efficacy in other diseases.

"We are excited to partner with NINDS with the goal of helping bring us closer to a cure for SMA and other diseases or injuries to the nervous system," said Audrey Lewis, executive director of FSMA. "Families of SMA is proud to continue to be on the forefront of research and to team with other diseases to help collaborate in finding treatments for neurodegenerative diseases."

Families of SMA is a volunteer-driven nonprofit organization. Founded in 1984 by parents of children suffering from SMA, FSMA is the largest international organization dedicated solely to: eradicating SMA by promoting and supporting research; helping families cope through informational programs and support; and educating the public and the medical community about SMA. This is the only international organization that specifically provides assistance to families in the form of equipment loans, education, conferences, emotional support and research. Based in Libertyville, IL, the organization has more than 20 chapters worldwide and more than 4,500 member families. For more information visit the website http://www.curesma.com or call 1-800-886-1762.

Direct inquiries regarding Families of SMA to:

Lenna Scott/Jennifer Zeidler at (847) 835-4990 or (847) 975-4171 Cell.

Researchers participating in the Families of SMA International Research

Meeting are available to comment June 21-23.