We have a daughter who was diagnosed with the juvenile form of MLD in June of 2011. That is also when we found the MLD Foundation when searching online and attended our first MLD conference. It was at the conference that we met other parents who were so helpful to us by
Mission: Our mission is focused specifically on MLD. "We C.A.R.E." is our mission: * facilitating Compassion for families * increasing Awareness * influencing and funding Research * promoting Education
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.
Results: MLD Foundation is working with researchers to develop a MLD newborn screen for MLD so newborn babies can be identified with MLD before symptoms appear and can qualify for therapies that will change their outcomes. There is a de-indentified pilot on-going in Washington State and we hope to start an identified MLD Newborn Screening pilot in New York State shortly heading toward a RUSP application to get MLD added to the recommended newborn screening panel.
Target demographics: We are here to help those suffering with metachromatic leukodystrophy, a rare genetic terminal neuro-metabolic disease that most often affects infants ages 18-24 months and takes them from us a few years later.
Direct beneficiaries per year: Last year we directly helped dozens of MLD affected families understand the diagnosis, what options were available to them, connected them to each other and to clinicians that could help them. Helped famiies attend the MLD Family Conference with scholarships and travel grants.
Geographic areas served: world wide
Programs: We provide personal interaction with newly diagnosed families and those on the MLD journey to help them and connect them to others. We maintain close relationships with researchers, pharma companies, and bio-techs to move clinical trials and MLD therapies forward, and host MLD Family Conferences™ around the world to 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. We make a difference in those affected with MLD.
We have a daughter who was diagnosed with the juvenile form of MLD in June of 2011. That is also when we found the MLD Foundation when searching online and attended our first MLD conference. It was at the conference that we met other parents who were so helpful to us by listening to us, answering our questions and sharing their own experiences. The conference provided us with everything we were hoping for, education about the disease, the latest research, friendship and support. The MLD Foundation discussion list has helped us to connect to other families from all over the US and abroad so that we don't feel alone in this challenging journey. We are SO THANKFUL TO THE MLD FOUNDATION and to its founders, DEAN AND TERYN !