Tyler for Life Foundation, Inc., a newborn screening awareness organization, recently launched a national campaign, "Handout America," during which volunteers supply pamphlets entitled "A Parent's Guide to Newborn Screening." These pamphlets are to be displayed in hospitals, doctors' offices, clinics and any place that serves children and families.

The organization claims that each year there are 2700 children in the U.S. who die or are brain damaged but could have been saved with a newborn screening test. If you would like to volunteer to distribute the pamphlets, use the order form on the Tyler for Life web site or e-mail Kileen Hall at This email address is being protected from spambots. You need JavaScript enabled to view it. giving your address and the number of pamphlets you want. Ten pamphlets per doctor's office is the suggested maximum.

The Tyler For Life Foundation will be collecting quilt panels for a NBS Unity Quilt from families with children who have disorders detectable through newborn screening. This new project will involve all the families in a unified effort. The quilt will allow the families of children with these disorders to celebrate and share the lives of their children.

The mission of the quilt is to create a visual testimony of the most compelling symbol of newborn screening - the children touched by it. The quilt will be unveiled on Sept. 1, 2001 in celebration of NBS Awareness Month. To participate or learn more about the project, visit the Tyler for Life web site. You can also learn more about newborn screening, related disorders, and the Tyler for Life Foundation at or call 1-888-454-3383.

The Tyler for Life Foundation also hosts a discussion listserv for persons interested in corresponding with others involved in newborn screening. To join, send an e-mail to: This email address is being protected from spambots. You need JavaScript enabled to view it.


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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