
To those with new diagnosis of Metachromatic Leukodystrophy:
Your child may be able to participate in the upcoming Metazym Clinical Trial to be conducted at the University of North Carolina (UNC). Screening for 10-12 children is now in progress. Please contact Dr. Maria Escolar at (919)966-4810 for more information.
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"One Step Closer" Walk for Leukodystrophy
Flint, MI - Spring 2009
Tampa, FL - March 7, 2009
Austin, TX - March 21, 2009
South Carolina - April, 2009
New Jersey - May, 2009
Registration fee $20 (includes t-shirt).
Registration is open for all Walks! Click here to register online. You can pay your registration fee through PayPal.
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If you have ever wondered about the work of The Stennis Foundation, this video is a must see: http://www.youtube.com/v/6lHrup2gKtM
The Stennis Foundation is committed to raising awareness of the Leukodystrophies, and to raising funds for Leukodystrophies research. The fundraisers are "for the families" -- to bring Leukodystrophies families together with other Leukodystrophies families. The funds raised are used to fund desperately needed research, and cover administrative expenses. There are some interesting things happening in the world of research, in Mexico. Although these latest developments are not "FDA approved" they have given hope to many MLD families.
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Just a reminder, contributions to The Stennis Foundation are tax-deductible under IRS section 501(c)(3).
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