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If you want to know about metachromatic leukodystrophy (MLD), you've come to the right place! We C.A.R.E., we welcome you, and we're glad that you have found us!
Extraordinary Measures
The story of the development of a therapy for Pompe disease, one of the 40+ lysosomal diseases.
The story of the development of a therapy for Pompe disease, one of the 40+ lysosomal diseases.
Often your arrival here comes at a time of great personal trauma due to a recent diagnosis or encounter with MLD. We want you to know that you can count on us for support, information and to help you get connected with others who are also on the MLD journey.
Late infantile families ...
A MLD Natural History study is
currently recruiting in North Carolina.
More information here.
A MLD Natural History study is
currently recruiting in North Carolina.
More information here.
Be sure to check out all of what we have to offer.
Compassion will take you to the MLD Family where you can connect with others.
Awareness is where you will find what is being done to increase knowledge of MLD and how you can help. Check out Research to find the latest in efforts to treat and cure MLD.
Education leads to MLD-101 where you will find a comprehensive, yet very readable, layman's overview of MLD.
The MLD Foundation is a non-profit 501(c)(3) organization and appreciates your generous support. Please check out our Fund-raisers and MLD Stuff in the boxes below:
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Upcoming Events: Olivia's Walk & 7th birthday May 15 Phoenix Please let us know what you have planned. Recent Events: see other past events here If you wish to make a tax-deductible donation now, please click below or go to our donations page. |
Jan, 2010 - Extraordinary Measures, a new film from Harrison Ford, documents the development of an enzyme replacement therapy for Pompe disease. More here. Oct, 2009 - Hunter Kelly Newborn Screening Research Program -The NIH established a formal program to carry out, coordinate, and expand research in newborn screening and to increase the number NBS tests, better understand the long-term effects of living with these conditions, and to foster the development of new treatments. More here. Sept, 2009 - Empowering Our Children radio interview with Christine Hoffman and Dean suhr. Listen here: Listen here. March, 2009 - ERT Phase I/II Clinical Trial results released. The safety and dosing results of the Shire ERT (Zymenex Metazyme) have been released - and some enzyme made it to the cerebral spinal fluid. more here May 11, 2008 - GINA , the Genetic Information Non-discrimination Act, was signed into law. Learn more here. |
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