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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Community Reviews

Rating: 5 stars   Featured Review

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 !

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Rating: 5 stars  

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.

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Rating: 5 stars  

When our son was diagnosed with MLD in 2000 we found the MLD Foundation. It was so good to have someone to get information from when dealing with a disease with so little information available at the time. We needed advice and help to navigate our way through this disease. This foundation provides an opportunity for families suffering from such a devastating diagnosis to know that they are not alone, and that there are others that have been through this and can offer a shoulder to lean on, and can understand what they are going through.

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1 previous review
Rating: 5 stars  

7 people found this review helpful

Our son has been diagnosed with MLD for nearly 10 years now. This foundation has helped link us to others with this rare disease. We have been able to ask questions of others who have traveled this journey before us, or be a resource to new comers to this deadly disease. It has been a huge help to know you're not alone out there, and to find out what is being done to help with a cure that we hope will be there someday. This organization has been a huge blessing.

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

help with answers to questions, and contact with others for moral support.

What I've enjoyed the most about my experience with this nonprofit is...

the ability to ask questions of others who have experienced the same things.

The kinds of staff and volunteers that I met were...

kind, helpful, and caring.

If this organization had 10 million bucks, it could...

maybe find a cure for MLD!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

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Rating: 4 stars  

We have three children who were diagnosed with the juvenile form of MLD in late 2012. The MLD Foundation was our first stop for information, support, and community. They guided us through different treatment options and the yearly conferences that they hold gave us exactly what we needed in terms of information, education, support, and most of all.... hope.

They are developing more programs to suit the needs of families affected by MLD, and we are so grateful for their leadership and their advocacy.

This is a really great non-profit that devotes itself to the needs of families desperate for answers and support for a rare and cruel disease.

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Rating: 5 stars  

1 person found this review helpful

The MLD Foundation has helped me and my family in so many ways ! My daughter Sofija was diagnosed in Sept.2008.
We live in Serbia that is a country which was bombed in 1999. so it was very hard to find some support and understanding, in any way by doctors or friends.Doctor told me that they know about MLD from their books from college.
So everything I wanted to ask ,any question I didnt get response Just words ,, May God help you ,, there is no medicine,don't spend money on some alternative medicine.In This Foundation I find answers on all my questions,now I'm the person who teach, tell doctors about this horrible disease,and tell them a news about all kinds of research that are going on in the World about this disease.
So Thank You That you exist .

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Rating: 5 stars  

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.

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Rating: 5 stars  

1 person found this review helpful

Our daughter was diagnosed with MLD in March 2012. I´m so thankful, that I found this group although we live in Germany. It is such a great resource of knowledge and understanding of MLD.

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Rating: 5 stars  

My daughter was diagnosed with MLD in 2011. The MLD Foundation has helped me connect with other families so that I know I am not alone in this journey.

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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  

1 person found this review helpful

As many will undoubtedly say, "This is a group no one wants to be a part of, but we are very, very grateful for it's existence." With a disease so rare, it is critical that info/knowledge/experience be "housed" in one area. MLD Foundation is our clearing house for care, therapies, support. This group bridges the miles and spans the concerns of all members. EVERYONE has a voice. There are so many inspirational and supportive souls, some who post frequently, and some who choose to be less involved, but always there when needed. Teryn and Dean, MLD parents themselves, are selfless, compassionate, forward-thinking and proactive leaders. When our 21 year old son was dx in 2013, we were told to go home and take care of him. Our story is turning out dramatically different from that 2013 advice. This group has walked us through it all. We feel blessed and honored to be a part of it.

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