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
Write a Review

See How $25 Can Help

More Info

EIN 93-1320953
+1 503-656-4808
Invite people to share their experience with this nonprofit!

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

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.

Was this review helpful? 
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!

Was this review helpful? 
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

Was this review helpful? 
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

Was this review helpful? 
Rating: 5 stars  

The MLD Foundation has helped me and my family in so many ways. If I have a question about MLD I can post it through the email discussion board and someone replies almost instantly. The MLD Foundation has always been there for emotional support as well as providing updates and resources for MLD. This year at the upcoming MLD Conference a Webinar is being offered for those that cannot attend.

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

Through the email discussion that occurs on a daily basis.

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

None, Dean and Teryn have done a fantastic job with everything.

Was this review helpful? 
1 previous review
Rating: 5 stars  

7 people found this review helpful

Tell your story here and help others understand this charity Teryn sent me an email shortly after my son was diagnosed with MLD. She and her husband, Dean introduced me to an amazing discussion board that is tailored to the families around the world that have children, family members, and spouses with MLD. This organization has helped so many people in so many ways. The MLD Foundation has helped me through many trying times and I am grateful that they have made this available to all of us. Rhonda McMinn ( Tyler, 6)

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

My personal life. As I mentioned earlier, this organization has helped so many of us that have children, family members, and spouses with MLD. This is a place I can come to everyday and ask a question without being judged and I can give advise to others.

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

I can't think of any changes that need to be made.

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

The freedom to ask anything without being judged and getting great feedback.

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

Dean and Teryn are such wonderful people and i am very greatful that they started the MLD Foundation.

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

Coordinate more conferences to bring awareness to the public about this horrible disease, MLD.

Ways to make it better...

I haven't had a bad experience.

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

That the conferences are not available in all parts of the country.

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

I hope that the MLD Foundation is around for many years to come!

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful? 
Rating: 5 stars  

MLD Foundation help raise awareness about MLD, and also support those suffering or are caring for a loved one with MLD. It is a great support system.

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

they have a discussion list that you can email and ask others that are caring for people with MLD and find numerous different answers to many different things, if you are going through a hard time you can vent and not be judged at all.

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

I wouldn't make any changes to this organization.

Was this review helpful? 
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

Was this review helpful? 
Rating: 5 stars  

Dean & Teryn founders of The MLD Foundation have children that have & do suffer from this disease. They know how difficult it is to get information on how to help people affected with MLD. In an effort to help others not have to go through what they have been through they started this foundation in order to help others have access to information. They have many contacts in Medicine & Research that has been very valuable to many people. The MLD disscussion group which they started has been an invaluable sorce of information for me & many, many others. They work tirelessly and effectively and helping other families affected with MLD & they have meant many of them. This foundation offers support most of us can not get elsewhere even in the medical community it is difficult to find doctors that have even heard of MLD and most of them don't know what kind of treatments are needed. I have had 3 children with MLD and I am so thankful for the MLD foundation they have been a great source of help, knowledge, & comfort to me and I know many, many others.

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

This foundation offers support most of us can not get elsewhere even in the medical community it is difficult to find doctors that have even heard of MLD and most of them don't know what kind of treatments are needed. I have had 3 children with MLD and I am so thankful for the MLD foundation they have been a great source of help, knowledge, & comfort to me and I know many, many others.

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

NONE

Was this review helpful? 
Rating: 5 stars  

5 people found this review helpful

This group has made me feel supported and I no longer felt all alone in my journey with this disease. This online connection has been a powerful resource for a rare disease that has devastating effects on it's victims and families. Resources and information is crucial in diseases such as this one and the MLD foundation has done just that.

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

by receiving personal support and connections to medical and research persons throughout the world involved in working to cure this disease.

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

work to more quickly cure MLD

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-7-01

Was this review helpful? 
Rating: 5 stars  

5 people found this review helpful

My family has suffered through two diagnoses of MLD. This site has been an invaluable resource for our families. This site covers everything from Support Groups and Learning Libraries, to current Global Research and Clinical Trials. It truly is a One-Stop for everything MLD!

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

Support Groups, Links to expert Medical Personnel, current Clinical Trial enrollments, Learning material and videos

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

Family connections. Knowing you're not alone is priceless.

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

amazing!

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

potentially find a cure.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-6-01

Was this review helpful?