the Extraordinary Measure quilt here:
We recommend you vote for Reese's video to focus all our votes on one video. All the videos are worthy - but if we split the votes across them all then none of them will win.
MLD is one of 50 Lysosomal Diseases. A new baby is born with a Lysosomal Disease every 30 minutes!
Extraordinary Measures, the Harrison Ford produced movie starring Brendan Fraser with Harrison Ford and Keri Russell, released January 2010, documents the true story of John Crowley, a parent who founded a drug company in his quest to find a cure for Pompe disease (one of the lysosomal diseases) which affects his two daughters. He founded Amicus Therapeutics and remains their President and CEO. You can learn more about Lysosomal Disease and Pompe disease by clicking here.
The "back story" about Duke University and Dr. Kishnani's involvement in the development of the enzyme replacement therapy, Myozyme. A bit about the filming of the movie, known back then as "The Untitled Crowley Project", around Portland Oregon. Information about Pompe research at OHSU under Dr. Steiner. This was the first time Nike allowed filming on their beautiful Beaverton, campus - they donated the location payment to Doernbecher Children’s Hospital.
Did you know ... Each LD may be rare ... however, one in every 5,000 newborn babies has Lysosomal Disease.
The lysosome is commonly referred to as the cell’s recycling center because it processes unwanted material into substances that the cell can utilize. Lysosomes break down this unwanted matter via enzymes, highly specialized proteins essential for survival. Lysosomal disorders are triggered when a particular enzyme exists in too small an amount or is missing altogether. When this happens, substances accumulate in the cell. In other words, when the lysosome doesn’t function normally, excess products destined for breakdown and recycling are stored in the cell. [from Wikipedia]
Learn more about Lysosomal Disease and Pompe disease by clicking here. Help us fund a cure for MLD here.
You may wish to visit the MLD Foundation for information on metachromatic leukodystophy or the Hide & Seek Foundation for more information on Lysosomal Disease as a group.
This page is sponsored by the world's premiere source of layman's information about MLD (metachromatic leukodystrophy), one of the two Lysosomal diseases that are also leukodystrophies (Krabbe & MLD) . Please refer to the MLD-101 page of the MLD Foundation web site for research and cure for MLD work in process.
MLD is the most common leukodystrophy.
The MLD Foundation slogan, "We C.A.R.E." reflects our mission of Compassion, Awareness, Research and Education for metachromatic leukodystrophy.
Donations to the MLD Foundation are tax deductible and will be used to further activities in these four areas.
The MLD Foundation is a 501 (c)(3) non-profit organization. We were formed in May 2001 to serve families affected by metachromatic leukodystrophy (MLD), a terminal genetic condition affecting people throughout the world.