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June 13, 2014

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June 13, 2014

I joined recently. I have a son who has been severely injured in the womb by this awful virus. He is now 34 years old and I always wished to find a connection with other families. I have always felt like a part of my life was like living alone on an Island, even though I had contact with other people with disabilities. Being able to connect with these other families has been so useful in understanding what happened more fully to my son.

As an older parent I am learning from the younger ones, many of whom are younger than my own children and I hope as an oldie I can benefit them at times.

Ways to make it better...

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

I think the organisers are doing a great job.

More feedback...

How would you describe the help you got from this organization?

A lot

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

July 5, 2011

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July 5, 2011

Our daughter was born with cCMV 15 months ago. We had never heard of CMV before our lives were changed by it. We spent several months feeling alone. We tried to talk to doctors and therapists to try and help us connect with other families with children with cCMV without any success. Finally, my wife connected to Tracy with the Brendan B. McGinnis Congenital CMV Foundation and within hours was plugged in to a network of other families who understand what we are going through and have been able to guide us through some of the challenges of raising a child affected by cCMV. Thank you for what you do!

The Great!

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

Online support groups, annual meet-up to get more information and build connections with other families.

Ways to make it better...

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

Easier to find and a knowledge-base of frequently asked questions.

July 3, 2011

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July 3, 2011

My son is now 11 years old and was born with Congenital CMV. It wasn't until he was 10 years old that I found this foundation. For 10 years I felt completely alone. Through the CMV foundation I am now connected with literally hundreds of CMV families world wide and can get almost any CMV question answered with-in minutes thanks to the vast on line network of other CMV affected families and professionals. Without the CMV Foundation, I would still be alone.

The Great!

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

By attending an event put on by the CMV foundation called "Making Tracks". It was amazing spending 3 days with CMV families from across the US, sharing stories and hardships, and making a forever bond of friendship, not only for the parents, but the kids as well.

Ways to make it better...

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

I would continually look for new and creative ways to raise awareness.

July 2, 2011

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July 2, 2011

The Brendan B. McGinnis Congenital CMV Foundation is dedicated to the CMV Families, raising awareness and CMV Vaccine Research. We found this foundation on the web when my son was finally diagnosed with cCMV at almost 3 years old. They have connected us with so many families affected by CMV all over the world. Being in the military and having this foundation on our side always will mean that wherever we will be next, we can connect with other families near by and will never feel alone again in this struggle.

The Great!

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

getting connected and staying up to date on CMV research and legislation.

Ways to make it better...

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

none!

More feedback...

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

How did you find this group?

Google

When was your last experience with this nonprofit?

2011

July 2, 2011

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July 2, 2011

The Brendan B McGinnis foundation was a god send to us,found them on face book and untill we connected with them we were SO alone,our granddaughter has CMV and no-one had even heard of it! We were at a loss,we didnt know where to turn or what to exspect and we as grandparents & parents felt HELPLESS to help our sweet lil girl.Thanks to the foundation we have been steered to Doctors,therapests and alot of moral support & advice..THANK THE LORD for these folks,theyre such a god send,cant say enough good things about them.

Photos

The Great!

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

contacted Ms.Tracy & she helped us find the right doctors for Ari.Also shared her experiance on the kids not eatting , to watching for differant types of seizures..also where to go for wheelchairs ect..

Ways to make it better...

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

DO absolutley nothing !This foundation needs Money & Exsposure,Its ran with love & personal exsperiance and its fantastic!

June 29, 2011

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June 29, 2011

well this is a great foundation. I didnt know to much about CMV and thought I was the only one going threw this. Im happy to found this and have learned so much. Thanks you guys are great and awesome. keep up the great work at educating everyone about CMV.
Much Love Alicia.

The Great!

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

great

Ways to make it better...

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

its perfect the way it is.

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5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
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3 hours of volunteer time for this nonprofit will...

Hand out CMV informational pamphlets and make phone calls to local media asking them to air our PSA.