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Trisomy 18 Foundation

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Birth Defects & Genetic Diseases Research, Down Syndrome, Health

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.

Community Stories

109 Stories from Volunteers, Donors & Supporters

7

Client Served

Rating: 5

I don't know how I would have handled the diagnosis of my daughter Alexa without the Trisomy 18 Foundation team and their online support. My first pregnancy 6 years ago, I was blessed with twin girls, Alexa and Sophia . We found out half-way through our pregnancy that one of our beautiful babies had Trisomy 18 and as you can imagine, we were devastated. Before then I had never heard of such a condition and so I searched the internet and came upon the Trisomy 18 Foundation's website which taught me so much. I was then contacted by an admin and then also paired with a volunteer who happened to be another mom that had gone through exactly what I was going through and helped me every step of the way. It's an amazing network of other families that are supportive and a foundation leader that fights for families and children with Trisomy 18 every day. I am forever grateful.

8 Lee H.

Client Served

Rating: 5

When we found out 5 years ago that one of our twins had Trisomy 18, and our other twin was healthy, it was the most lonely feeling I've ever had. We were immediately thrust into a heart wrenching horror that seemed to have no beginning and definitely no end other than a seeming end to our lives as we knew it. We had no idea what to do, how to think, how to fight for this child we had already come to love. Then I found the Trisomy 18 Foundation. I not only was able to find all the information on what Trisomy 18 WAS, I was able to turn this horror into something that was as beautiful as it could have been, and leave us, 5 years later, with memories so precious, and memories that have less pain. Day or night there were people on the message boards who could offer advice on any and everything, who were always willing to lend an ear, support, and friendship. They KNEW what we were going through. Some of those women I am friends with to this day. If there was a specific question, the staff...the Foundation itself was always there to assist, answer and aid in any way they could. I have learned that Trisomy 18 is the killer of dreams. Through the Trisomy 18 Foundation, I have learned that I AM my childs voice, I AM the keeper of her legacy, and I CAN plan her a life or death that matters, that is important, that will help me remember her with less pain. I am forever grateful for the Trisomy 18 Foundation.

8

Client Served

Rating: 5

I lost my beloved 1st son in October of 2007 after a Trisomy 18 diagnosis. I knew nothing about trisomy 18 and knew no one else that had walked this heartbreaking road. Through the Trisomy 18 Foundation, I found much more information than even my doctor could offer me and more importantly, I found a community of families that had walked in my shoes and could share and cry and heal with me. This is an organization that opens its arms to all families affected by trisomy 18, no matter the choices each family makes. Four years later, my heart is much healed, but I remain an avid supporter of this wonderful, selfless organization.