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Trisomy 18 Foundation

Rating: 4.7 stars   86 reviews 9,131

Address:

Administrative Office 4491 Cheshire Station Plaza, Suite 157 Woodbridge VA 22193 USA

Mission:

T18F is dedicated to making Trisomy 18 a preventable and treatable condition and ensuring that all parents have access to compassionate and knowledgeable care that respects the humanity and potential of their child diagnosed with Trisomy 18.

Target demographics:

families and their children impacted by Trisomy 18

Direct beneficiaries per year:

over 10,000 families

Geographic areas served:

United States, Canada, International

Programs:

Trisomy 18 Patient Education, Legacy Pages Program, Peer Support Communities, Accelerating Research into Potential Therapies and Preventions, and Community Events and Awareness Days.

2015 Top-Rated Nonprofit
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More Info

810-867-4211
www.trisomy18.org

Reviews for Trisomy 18 Foundation

Rating: 5 stars   Featured Review

7 people found this review helpful

Words cannot begin to express how deeply grateful I am that I found the Trisomy18 Foundation. When I was 6 months pregnant we discovered that my identical twin girls both had trisomy 18. One twin had obvious physical abnormalities that would be incompatible with life if no surgical intervention was done (which no MD would do once the T18 diagnosis was given), and the other showed no physical problems in utero, which led us to want to continue the pregnancy and give our girls every possible chance at survival. The foundation, first and foremost, allowed me to connect with other families who had been through similar experiences, which was huge for me because I felt so alone with this diagnosis- I had never heard of Trisomy 18 before and neither did any of my friends or family members. This proved even more important for me after we lost our twins after birth because what helped me most with the grieving process, even now- 7 years later, was connecting with other parents who had been through this too. Even now I have awesome lifelong friendships with moms who have gone through my similar experience. We contact each other when we need support, and we've been able to share our lives and experiences with each other as we deal with life going on after the death of our children.
And I cannot say enough about the foundations president, Victoria Miller. The care and compassion she gave is in our darkest and scariest times made such a world of difference. She even called me personally and gave me tips and advice on how to advocate for my baby girls when they were born. She was absolutely amazing!
Although my girls didn't live long in this earth after they were born, the Trisomy 18 Foundation has been a life saver for me and I am thankful every day that myself and countless other families out there continue to have it as a resource.

 
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Role: General Member of the Public
Rating: 5 stars  

My grandson, Nehemiah was born with Trisomy 18,on December 31, 2013. At the age of 56, I had never heard of it. Through our tears and prayers he lived 3 days. This organization helped so much in this heartbreaking situation. I still pray for a cure every day so babies can live. Great non-profit. Now, let's find a cure.




 
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Rating: 4 stars  

In 2005 I found out my oldest son and wife were expecting our first Grandchild. This news still brings such joy to my heart with tears as they stream down. Even after all these years the Pain of her loss is still so unimaginable.
The day of her sonogram that brought the news she may have hydrocephalus of brain I read all I could on it. Found there were stents to be put in to drain the water after birth.
Next sonogram determined Trisomy 18. along with she was a Girl Alyssa

 
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Rating: 5 stars  

My niece was born with Trisomy 18 in 1993. I so wish an organization like this had been around back then. I have donated to this site. Just look and see what a great resource they are for the families .

 
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Role: General Member of the Public
Rating: 5 stars  

As a parent who was faced with a possible trisomy 18 diagnosis and having never heard of it before this foundation helped provide information, hope and comfort at a time of tremendous stress and sadness.

 
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Rating: 5 stars  

1 person found this review helpful

The Trisomy 18 Foundations gives hope to families blessed with these very special babies. As a grieving parent, I find comfort in the stories shared and support shown by this amazing organization.

 
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Rating: 5 stars  

1 person found this review helpful

When my wife was 22 weeks pregnant, our unborn son was diagnosed with Trisomy 18. At the time, we knew nothing about the disorder and we felt utterly alone. The Trisomy 18 Foundation and its contributors provided us a wealth of information and a glimmer of hope in a hopeless situation. We will forever be grateful for the positive role this community has had in our lives.

 
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Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

The Trisomy 18 Foundation provides a lifeline for parents faced with a new diagnosis of Trisomy 18. The executive director is knowledgeable, compassionate and unendingly dedicated to this important work.

 
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Role: General Member of the Public
Rating: 5 stars  

4 people found this review helpful

When my Brilyn was diagnosed with T18 at the tender age of 2 days old, we were devastated and felt so very, very alone. We searched for support and found Trisomy 18 Foundation. We were given the support and information we very much needed. It's been over 6 years, and I am so very thankful for the wonderful, unconditional support and tlc that our family has received.

 
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Rating: 5 stars  

2 people found this review helpful

The founder of this group has one of the biggest hearts!

 
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