Rating: 4.94 stars 32 reviews
Location: 21345 Miles Drive West Linn OR 97068 USA
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.
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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.
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
When was your last experience with this nonprofit?