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zeester2001

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MLD FOUNDATION
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

MY ROLE:
Client Served & Contacted MLD Foundation for emotional support after son was diagnosed with MLD.