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You all are awesome … we think there were several dozen letters sent to the FDA – just for MLD, and we know that the rare and lysosomal disease communities also contributed.

Many of you have asked how you can get involved with awareness that has an impact … Every letter and phone call you make puts us head and shoulders above other organizations. This is how you can help us advance the cause of MLD and similar diseases. There are a lot of things these days were the voice of the people is carrying much more impact. DC is alert to the fact that all of you are voters. In addition, we are trying to increase our involvement with international rare disease policy.


We’ll be sharing a lot more than just policy there … we’re spearheading a multi-million dollar research grant application in 2013, we’re active in the Leukodystrophy Alliance, and we’re noodling how to get the key MLD experts together to really focus research and potentially develop a standard of care.

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