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  

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  

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  

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.

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Rating: 4 stars  

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!!!

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

my son

If I had to make changes to this organization, I would...

nothing - just have more $$ raised for finding a cure

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Rating: 5 stars  

8 people found this review helpful

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!

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

in finding a place to feel comforted and joined together with others who are travelling the same path as myself and family. Having a child with an incurable, fatal illness is terrible. Meeting people through MLD foundation has helped me so much

If I had to make changes to this organization, I would...

None. They are perfect.

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

Meeting other families affected with MLD

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

very kind and caring

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

help cure MLD

Ways to make it better...

It is perfect the way it is

In my opinion, the biggest challenges facing this organization are...

we need more fundraising. we all need to help with that aspect

One thing I'd also say is that...

I think Dean and Teryn are doing a wonderful job. They have dedicated there lives to helping families and trying to overcome this monster...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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