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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 22, 2012

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July 22, 2012

I became involved with the Brendan B. McGinnisCongenital CMV Foundation because I too, have a son who is disabled due to the virus. I have participated for 4 years in the annual Walk-n-Rollathon in the Atlanta area and organized it this past year. My son is 29 years old and there was very little information available at the time of his diagnosis and for many years. The community outreach and educating the public is so important. Tracy is doing a wonderful service for the community by working to make the public aware of CMV and to raise donations to support research for a vaccine.

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

July 27, 2011

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July 27, 2011

The Brenden B McGinnis COngenital CMV Foundation has been crucial in getting information out to the public, both the general public and professionals too about exactly WHAT this condition is and what it means to both the kids who have CCMV and their families. They have both also promoted, and helped fight for necessary research to develop a vaccine against cCMV. Both Tracy McGinnis and Chris Cady have children disabled by this virus so they know first had what the families who are affected by this virus are going through. They have offered both emotional and educational support to myself as my daughter who is now 7 was born with cCMV. Until finding this foundation, i felt alone in our fight unsure if the direction we were heading in was "normal" or if there was things going on with my child that i was unaware of, or what I should be looking for. My pediatrician has never knowingly treated a cCMV child, so we were both kind of "winging it". Now, with the support and network of this foundation, i know things that other parents have experienced with their children, what other doctors are saying and doing, and I feel that my child is on the right track towards the best future she can possibly have. My thanks to both Tracy Mcginnis and Chris Cady to take such an experience in their lives and share the inforation, experiences, and friendship with others so we dont all feel so alone in our battle to win the fight against congenital CMV infection.

The Great!

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

networking to meet other families, both online and in person and obtaining information about my childs condition

Ways to make it better...

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

none

July 8, 2011

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July 8, 2011

Tracy McGinnis and Chris Cady are good friends doing all they can to increase the awareness on CMV and to raise money for its cure.

The Great!

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

I have seen the results with the campaign tours and support being given to families of children with CMV.

Ways to make it better...

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

Just more people to support it!

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 5, 2011

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July 5, 2011

MY YOUNGEST BABY BOY WAS DIAGNOSED AT THE AGE OF 4 MONTHS WITH MICROCEPHALY DUE TO CMV , HE IS NOW 13 YRS =) Brendan B. McGinnis Congenital CMV FOUNDATION IS ABSOLUTELY AWESOME AND SO HELPFUL ! THANK YOU

The Great!

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

All the incredible information and facts about CMV, make it a little easier to deal

Ways to make it better...

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

No changes needed

More feedback...

Will you volunteer or donate to this organization?

Likely

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

A lot

How did you learn about this organization?

FACEBOOK FRIEND

When was your last experience with this nonprofit?

2011

July 5, 2011

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July 5, 2011

My daughter was born with congenital CMV. I haven't heard of CMV until a few days after when they found different affects on her that had lead them to believe that it was cCMV. If I had known about this virus I would had been extra cautious and took the necessary precautions needed to prevent this virus to the fullest of my ability. Let's continue to spread awareness and make everybody aware of this awful yet potentially fatal virus!!! Let's stop CMV together and fight for our children!

The Great!

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

N/A

Ways to make it better...

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

No changes are necessary. Tracy Mcginnis does a wonderful job and she is a remarkable woman for what she does!

July 5, 2011
1 person found this review helpful

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July 5, 2011
1 person found this review helpful

I know about the Brandan B. McGinnis cCMV foundation because my son Owynn was born with and died from cCMV. My son was 14 months old when he died. While he was alive and even now I work with this wonderful charity.

The Great!

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

I have been to the Making tracks together family event for the past two years.

Ways to make it better...

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

say none

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

My child was born with CM. I had no clue what it was or how to deal with the issues that would arise. The Brendan McGinnis congenital cmv foundational helped my family through some very rough times. I am in LOVE with This foundation. Lets spread awareness.

The Great!

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

a way that is unexplainable if you have never been in this position before.

Ways to make it better...

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

be on the board, so I could be with the BEST foundation ever :)

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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
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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.