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June 20, 2010

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June 20, 2010

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!

The Great!

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

Ways to make it better...

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

None. They are perfect.

More feedback...

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

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

June 17, 2010

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June 17, 2010

Our son has MLD and the foundation has been an amazing support through the different stages of our sons illness. We have been able to ask questions to families all over the world, and in return have also offered our help to people we have never met but we feel we know them because of the bond the MLD community has. There is no judgement, but there is information that alot of the doctors can't give us due to the rareness of MLD so being able to communicate with others going through the same problems in priceless.

The Great!

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

we have had some very hard times over the last 3 years and the MLD foundation has always been an amazing support to us.

Ways to make it better...

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

Make sister foundations through out the world, that link together as one.

More feedback...

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

the friendships & information we have recieved.

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

raise more awareness about MLD and fund alot more research to help find a cure.

Ways to make it better...

They had a cure :(

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

The MLD foundation is a family, one big world wide family.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 17, 2010

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June 17, 2010

my daughter has MLD, the effect it has had on our life is devastating,Dean and Teryn are lovely genuine caring people who have an effected daughter themselves yet they strive to raise awareness of this horrid disease and offer words of comfort, advice and make you feel your not alone, even though they live in USA and we are in england. Without them many people would feel totally alone

The Great!

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

meeting them when they came to visit england we recieved support and warmth and met with others who are suffering too

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 16, 2010

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June 16, 2010

This foundation has helped in many ways, we have been able to attend MLD family gatherings to help us get to know others with the same disease. I love the discussion group you can email everyone with questions and nobody will judge you, you can also put in some input that people will listen to and sometimes you just needed to hear something that someone has said. This foundation helps you to know that you are not alone in the struggles that you have to overcome with MLD and there are others that are going through the same things that you are. They also have conferences for people but I have not been able to attend any of them but the info they put on the foundation website is always very informative.

The Great!

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

The family gatherings were we met others with the same disease that we are living with day to day. The email discussion group is the most helpful,

More feedback...

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

the discussion group

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

amazing, they are excellent to talk to and they have lived with this disease also so they have great knowledge and insight with what we are all going through

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

find a cure for Metachromatic Leukodystrophy, and keep it from killing many others

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 16, 2010

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June 16, 2010

The MLD Foundation was an amazing organization that helped our family deal with and have support for the most tramadic ordeal a family can be faced with...the sickness, decline and eventual death of our three year old son. This organization was frank, provided information and support for our son and family and this process for us would have been so much harder without the support of the MLD Foundation.

The Great!

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

The MLD Foundation was an amazing organization that helped our family deal with and have support for the most tramadic ordeal a family can be faced with...the sickness, decline and eventual death of our three year old son. This organization was frank,

Ways to make it better...

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

No change necessary.

More feedback...

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

just a wonderful organization, with kind and carring people would bent over backwords to help us out.

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

Amazing human beings.

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

Help find a cure for MLD and save the lives of three year old children that die each year from this terrible disorder. You can not imagine how terrible this disorder is,it takes a healthy child at 18 mths and takes away all aspects of life and then kills

Ways to make it better...

na

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

na

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

na

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 16, 2010

more

June 16, 2010

I helped in the planning stages of forming this organization. Was at first ever meeting. Met others who are dealing with this horrible illness and continue to talk with families on how things have worked/not worked for us as a family living with someone with this illness. I have met many good friends through this organization. It was a great support to me when I had no one to talk to. I would have gone crazy dealing with this illness alone without having an online discussion group to turn to when I wanted someone to talk to. It was so nice to know we are not alone with this illness.

The Great!

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

knowing that I am not the only one who has a family member with this illness.

More feedback...

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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