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18 Reviews
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June 9, 2011

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1 previous review
June 17, 2010

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 disc... more

June 9, 2011

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.

The Great!

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

Through the email discussion that occurs on a daily basis.

Ways to make it better...

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

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

June 17, 2010

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)

The Great!

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.

Ways to make it better...

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

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

More feedback...

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

June 8, 2011

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June 8, 2011

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.

The Great!

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.

Ways to make it better...

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

I wouldn't make any changes to this organization.

April 1, 2011

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April 1, 2011

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.

Photos

The Great!

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.

Ways to make it better...

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

NONE

July 28, 2010

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July 28, 2010

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.

The Great!

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.

More feedback...

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

June 21, 2010

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June 21, 2010

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!

The Great!

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

More feedback...

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

June 20, 2010

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June 20, 2010

My daughter Cheyenne was diagnosed with MLD 2 years ago. What a helpless, hopeless feeling that was! Thank the heavens I found the MLD foundation to turn to. They have been a source of hope, answers, and just knowing that youre not alone in this battle is worth the world!

The Great!

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

support for MLD

More feedback...

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

conferences, support

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

amazingly strong, wonderful people

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

get closer to finding a cure

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

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June 20, 2010

I have nothing but great things to say about the MLD Foundation. They were warm and receptive right off the bat. My son was diagnosed with MLD in November 2008 after having an abnormal gait. He was tested twice to confirm the MLD diagnosis. Soon after my son was diagnosed, we contacted the MLD Foundation. I had so many questions to ask people in the support group that they offer online for families. All my questions were answered, and it was nice to get others points of view and hear their stories. The other nice thing that I experienced with the MLD Foundation is that the cofounders, Tery and Dean Suhr, have made it possible for families to get together around the world to meet other families with MLD. I was able to attend the last MLD conference they had last year, and it was so nice to meet them and other families. I no longer felt alone. So, the MLD Foundation is a big source of support in my life and I am grateful to them.

Photos

The Great!

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

getting emotional support and gaining knowledge about the MLD.

Ways to make it better...

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

not change a thing.

More feedback...

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

going to the MLD conference which they hold every year and being in contact with other MLD families online throughout the year. It makes me feel connected to a larger community even if they are not in person.

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

just lovely. Dean and Teryn are wonderful people who really keep up-to-date with the latest information on MLD and just a tremendous support to MLD families around the world.

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

possibly come even closer to finding a cure or stop the regression completely in MLD patients. Right now, there isn't much to stop MLD. SO, more funding would be a tremendous plus.

Ways to make it better...

more people got involved in fundraisers to raise money for the MLD Foundation. I think for me, it is finding the time to organize it. I know some families have done it already, and they are amazing for doing so.

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

that MLD families are spread across the world, and it is hard to have all families to get together. However, that is why the online community exists.

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

the MLD Foundation welcomes everybody that is some how involved with MLD. They never turn anyone away.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010
1 person found this review helpful

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June 20, 2010
1 person found this review helpful

My son has adult-onset MLD, the rarest form of this genetic disease. After struggling alone for four years with mis-diagnosis and no-one else in the UK to help us we finally found the MLD Foundation. They have given us unwavering support and help throughout our journey. Our son's MLD has been halted/slowed by a stem cell transplant from our carrier son. When we went through major traumas when the transplant broke down and knew that whenever we used the e-mail forum there would be somebody there to support us and offer kind thoughts and advice. As a parent of an adult, our story is somewhat different from other families. Our son is now 38 and 14 years post transplant. We still struggle and know that we have the MLD Foundation there to offer any support we may need. Without the MLD Foundation we would still be out there, feeling alone and lost. The MLD Foundation have given us valuable information on MLD helped us make our way through Scott's troubled life. We think the MLD Foundation deserves recognition for the way it helps new families through the first few traumatic months after diagnosis - one of the most difficult periodsTh. MLD Foundation is a "family" who care about us and our children.

The Great!

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

Through the MLD Foundation I have met other families with MLD, MLD sufferers and professionals who care for MLD sufferes. All provide essential support and encouragement.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

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June 20, 2010

'TAKE YOUR CHILD HOME AND KEEP THEM COMFORTABLE' THERE IS NO TREATMENT - THERE IS NO CURE. The MLD Foundation has given us a 'place' and a sounding board...to grieve...to ask questions even the 'best' doctors do not have answers for...they are a grieving family having TWO affected children - one who is in heaven now and one still battling this horrid disease - and have started a foundation to help all of us come together and try to make the best life for our affected kids. MLD may be 'rare'...but awareness and love are steps to helping our kids - and the MLD Foundation provides BOTH and more.

Photos

The Great!

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

We have an affected child...I can't imagine where we would be without the MLD Foundation...after so many 'experts' getting it wrong...it was (very sad) and also comforting to be amongst friends who also live as we do...we need to raise awareness.

More feedback...

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

We're a family - a small, rare, family.

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

Nothing short of amazing.

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

Help find a cure.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 19, 2010

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June 19, 2010

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.

The Great!

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

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

More feedback...

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

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