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   Featured Review

1 person found this review helpful

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  

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  

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

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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Rating: 5 stars  

The MLD Foundation is an amazing group of people fighting the same unfortunate journey. MLD is such a rare disease; many healthcare professionals do not have the knowledge to help answer your questions and deal with this cruel disease. The MLD family is there for you every step of the way. We couldn't have asked for a more supportive group of individuals to help us everyday. Thank you MLD Foundation!

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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! Our child was diagnosed in February 2014 and we were told to take him home and keep him comfortable. We were not given a support group or any valuable caregiving instructions. When I found this organization it has become an extension of our family. The conference we attended in the summer was so helpful and full of information. The family list serve allows us rare folks a chance to connect and vent and advise and help! I am forever grateful to the MLD Foundation and this community!
Pam Bennett

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Rating: 5 stars  

1 person found this review helpful

This Foundation has been a very important resource to us, both individually and as a family. At the time of my son's diagnosis it was our main source of information. During his illness the foundations discussion list was a source of support, advice and information on everything from day to day care issues to medical issues that we could bring to our medical team to help in our sons care as the medical team had no experience with this rare disease. Even now, since our sons passing, the MLD Foundation as been a support to us as we navigate life with our little boy in our midst. I am ever grateful for the work this foundation does for all MLD affected families across the globe- bringing otherwise isolated families together to gain comfort and support from far away but close at heart families.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

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