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MLD Foundation

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Nonprofit Overview

Causes: Health, Nerve, Muscle & Bone Diseases, Nerve, Muscle & Bone Diseases Research, Specifically Named Diseases

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.

Community Stories

5 Stories from Volunteers, Donors & Supporters


Client Served

Rating: 5

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 !



Rating: 5

MLD Foundation - thank you, we couldn't have climbed this Mt.Everest called MLD without you. blessings, Lorraine MacKinnon. You were there with everything whenever we needed you, thanks so much.

Gerri B.


Rating: 5

Our son was a victim of MLD. At that time there were no resources for parents/caregivers. This foundation has fulfilled a basic need for families. It is resource for information about MLD, support, comfort, friendship, and newest research information on this dreaded neuro-degenerative disease. It is valuable tool for all of those who deal with MLD on a daily basis.


Rating: 5

The mld foundation is a great and supportive
Foundation and very useful.I learn a lot
from families suffering the way I do.Also it's
a great supportive team I feel I am not alone
And not the only one going through this horrible disease.


Rating: 4

This Foundation has help us so much. Our family knew nothing about MLD and thanks to Dean and Teryn's help - they have connected us to many many families that are going through the same thing. The discussions have helped us with needs, pain management, symptoms.
They are wonderful and we would love to have them continued for ever and their help to try and get the word out as well as raise money for research has been terrific. Thank You Soooo Very Much MLD Foundation!!!



Rating: 5

My son Jared was dx. with MLD in 2007. Since then the MLD Foundation has helped so much. They have helped us meet other families with this very rare disease. I had never in my life heard of this disease before my son was dx. with it. Dean and Teryn are wonderful people commited to helping families suffering from MLD. Every year they have a medical conference that all MLD families can attend so we are kept well informed of any medical advances for the disease. This is a wonderful foundation!