Mld Foundation

Rating: 4.94 stars   32 reviews

Issues: Health

Location: 21345 Miles Drive West Linn OR 97068 USA

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.
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.
2014 Top-Rated Nonprofit
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EIN 93-1320953
+1 503-656-4808
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

My daughter was diagnosed with MLD in 2012. We were directed to this site by our doctor. It has been a lifeline for us. I don't know how we would have gotten through the past two years without the wealth or information it provides and the link to other families with MLD loved ones. They in many ways have become a second family to us.

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Rating: 5 stars  

6 people found this review helpful

my daughter has MLD, the effect it has had on our life is devastating,Dean and Teryn are lovely genuine caring people who have an effected daughter themselves yet they strive to raise awareness of this horrid disease and offer words of comfort, advice and make you feel your not alone, even though they live in USA and we are in england. Without them many people would feel totally alone

I've personally experienced the results of this organization in...

meeting them when they came to visit england we recieved support and warmth and met with others who are suffering too

How frequently have you been involved with the organization?

About every week

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