MLD FOUNDATION Overview
Target demographics: those suffering with metachromatic leukodystrophy, a rare genetic terminal euro-metabolic disease that most often affects infants ages 18024 monnths and takes them a from us a few years later.
Direct beneficiaries per year: dozens of MLD affected families improve quality of life for their loved ones with Compassion Fund grants and other compassion support.
Geographic areas served: world wide
Programs: the MLD Family Compassion Fund™ to support the need of those with MLD, close relationships with researchers and pharma companies, and hosting MLD Family Conferences around the world which bring together dozens of families, researchers, industry and regulators to learn about and discuss research, therapies, practical care and quality of life for MLD affected families. These are the only regularly scheduled MLD specific conferences and are scheduled in the United Sates and internationally.
Two things differentiate the MLD Foundation from other MLD and leukodystrophy focused organizations ... First is that we are specifically focused on MLD in all aspects of our work. Other foundations may support other diseases, related research, or more generally the whole basket of leukodystrophies. The MLD Foundation recognizes that research needs to expand to include MLD, not just to hopefully spill over to benefit MLD - hence our purpose to influence MLD-specific research. Along with influencing organizations and existing sources of funds, the MLD Foundation does some direct funding of MLD-specific research as well. Second, is that we are not just a fund-raising "machine" that raises money to fund research. The MLD Foundation is actively engaged in the lives of the families suffering with MLD and knows that these families must be supported while we work aggressively towards a cure for MLD.
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