Trisomy 18 Foundation

Rating: 4.82 stars   74 reviews

Issues: Health

Location: 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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EIN 77-0600393
810-867-4211
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Community Reviews

Rating: 5 stars   Featured Review

1 person 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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Rating: 5 stars  

1 person found this review helpful

When my daughter was first diagnosed in utero with T18 I had no idea what it was. My husband and I quickly searched online for anything we could find to obtain more information. We came across this great organization and learned so much. The comforting thing was that there were many families at different stages and we spent hours pouring through their individual stories. I'm glad that this organization provides valuable information for families.

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Rating: 5 stars  

1 person found this review helpful

T18 foundation is an amazing place to get support when facing such an overwhelming diagnosis, loss and struggle. After years of suffering a heartbreaking life changing event they still pick me up. They are a great team.

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Rating: 5 stars  

1 person found this review helpful

By far the most instrumental tool in a large bag of methods for my life long healing process.

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1 previous review
Rating: 5 stars  

5 people found this review helpful

I am not much of a writer or a reader however this organization taught me the intense value of both. When I was pregnant and was first told that my baby had a chromosomal disorder, my genetic counselor shared this website with me. In my life I would have never thought that writing and reading would be a lifeline that could help bring me from a depth of despair to comfort and acceptance with lifelong friendships gained. The from the heart sharing of pain as well as medical experiences gave me the sense that I was eventually going to get through it. How can I give trisomy18.org the proper acclimates it deserves. With forever gratitude!
Much love,
Emerson's mom

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

My daily life

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

Give it more money to provide professional meetings

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Rating: 5 stars  

1 person found this review helpful

After learning of our son Aden's T-18 diagnosis, we did a lot of research. This group of amazing people were an invaluable resource to our family. We are blessed by their wonderful support and information during this time. (Aden 5/1/08 full T18)

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Rating: 5 stars  

1 person found this review helpful

The Trisomy 18 Foundation was an invaluable resource for or family after our son's diagnosis at twenty-one weeks gestation. It gave us the support and courage to choose life for him. We felt prepared to support him during his brief life.

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Rating: 5 stars  

1 person found this review helpful

In 2005 I got the devastating news that the child I was carrying had T18. I had never heard of this, nor had any of my friends or family members. The doctor I had was nice, but did not provide helpful information on how to prepare for what was to come. It was a devastating time, and the only place available for me to turn to for help was the Trisomy 18 Foundation. Though it was the most difficult time in my life, I'm so thankful I had a safe, understanding and compassionate place to turn.

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Rating: 5 stars  

1 person found this review helpful

Our daughter was diagnosed with trisomy 18 at just 15 weeks into my pregnancy. We were completely devastated, but this organization makes you realize you are not alone. It's a place that you can go to where others understand completely how you feel. It also helped our family & friends learn more about trisomy 18.

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Rating: 5 stars  

1 person found this review helpful

As a grandmother this diagnosis tears at your heart for your grandchild and even more for your children facing the biggest challenge a parent can. For months I visited the site to gain knowledge which I did but also came away with peace. Not in understanding the whys...but in finding solace in knowing all these emotions are shared.

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Rating: 5 stars  

1 person found this review helpful

Our daughter was diagnosed with T18 after markers were noticed in our 20 week ultrasound. Nothing could have prepared us for what T18 meant for our family better than this organization. The information shared via message boards with other parents, and online resources cannot be found anywhere else online or in most communities. The website helps guide parents/family for the decisions that they will face from the time of diagnosis until after the birth of their precious child. Equally as important, each person involved with Trisomy 18 Foundation seems to have also been touched by Trisomy 18 in some way. This is so crucial in helping people heal! It is hard to truly empathize with someone who has never had to deal with T18 if it is something you have never dealt with yourself.

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