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27 Reviews
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August 20, 2013

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August 20, 2013

My son has PMG & when we first got the diagnosis, we were scared & felt alone. This organization made us realize that we're not alone.

Ways to make it better...

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

Change nothing.

More feedback...

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2013

August 20, 2013

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August 20, 2013

My daughter was diagnosed with PMG at 9 months. I live in Australia and the doctors I was seeing at little knowledge of this malformation, the Internet just gave a brief explanation. Through this organisation I have gained so much knowledge and so much support. Just knowing you can speak to someone who knows what you are going through is a breath of fresh air and makes everyday a little easier. Thank you PMG.Org.

Ways to make it better...

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

Move them to Australia.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

August 20, 2013
1 person found this review helpful

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August 20, 2013
1 person found this review helpful

This is a wonderful non profit organization that has helped to connect so many families who's lives are affected by PMG and it has helped to inform and educate the public about this rare disorder. This organization has helped to give so many families hope for their children's future and comforted many in their times of need.

More feedback...

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

August 20, 2013
1 person found this review helpful

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August 20, 2013
1 person found this review helpful

Grateful that this group not only connects parents of children with PMG, offering much needed support, and a sense of community, but is fighting to educate and bring awareness of this disorder across the nation!

Ways to make it better...

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

Increase media and marketing to help spread the word.

More feedback...

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2013

August 19, 2013
1 person found this review helpful

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August 19, 2013
1 person found this review helpful

this organization is wonderful it is the first place I found online when my daughter was diagnosed that really helped me understand what was happening with her and the people who are involved are very kind and very friendly they want to help you and they want to be able to help you I can't say enough good things about this organization they're wonderful

More feedback...

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

September 24, 2012
1 person found this review helpful

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September 24, 2012
1 person found this review helpful

This group provides sooo very much to its members: it soothes us in time of crisis; it gives us hope when we see what some of these children have achieved; it gives us extra prayers; and it helps to educate not only those of us with pmg kids, but the public as well. Kudos!

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2012

September 23, 2012
1 person found this review helpful

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September 23, 2012
1 person found this review helpful

This group is a great support to me and my family as we struggle through this life with our special needs child. Thank you!

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Will you volunteer or donate to this organization?

Unsure

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

September 23, 2012
1 person found this review helpful

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September 23, 2012
1 person found this review helpful

I have been amazed by the dedication and selflessness of the people associated with PMG Awareness. They daily strive to educate others about PMG and it's causes , symptoms and needs. They daily seek out families needing help who have a child with PMG...they also support other nonprofits in spreading the word nd getting people involved in the hopes of finding a cure, raising awareness such as Epilepsy foundation, etc. I am impressed with their comraderie, family mentality and their sincere endeavors. They deserve to be spotlighted so that others can be as touched and aided by their group!

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

September 23, 2012
1 person found this review helpful

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September 23, 2012
1 person found this review helpful

I would have been lost without this group. They have helped my family navigate my son's PMG diagnosis. They are always there for me and my son. I know I have somewhere to turn when I have a concern. Their support and dedication is invaluable to the children with PMG. THEY NEED THIS GROUP TO ADVOCATE FOR THEM AND THEIR FAMILIES.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

September 23, 2012
1 person found this review helpful

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September 23, 2012
1 person found this review helpful

I found this organization on Facebook after my baby girl was diagnosed with PMG. She had many many issues and other brain abnormalities but PMG was one of the few things that her doctors had a name for. Only it was a name I had never heard in all of my life. No one else had ever heard of it either. So I started looking online for any info about PMG that I could find. Basically all I found said that it affects everyone differently. I felt so alone and let down. No one could tell me anything about how this would affect my little girl, not even the doctors. But at least I found an organization like this full of people that were experiencing life with PMG. It gave me hope that living with PMG was not only possible but manageable. It was encouraging to see pictures and stories of how other families were coping with this. Unfortunately we only had 8 weeks with our beautiful girl. But at least we weren't feeling so alone in it.

More feedback...

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

Some

When was your last experience with this nonprofit?

2012

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