The foundation was there for our family when we needed them the most - at diagnosis. The wealth of information and support resources gave us a handle of the Full Trisomy 18 diagnosis 7 years ago. The foundation continues to be a source of information and support for our family. What I find to be inspiring of The Trisomy 18 Foundation is their commitment to push and advocate for scientific research into Trisomy 18. As parents of a child with Full Trisomy 18 & also trained scientists, we greatly appreciate what the foundation stands for & the goals they fight for. The foundation is dedicated to push for much anticipated scientific breakthroughs in Trisomy 18 research. Three cheers to this wonderful professional & compassionate organization that keeps me hopeful that in the future, a Trisomy 18 diagnosis will have a better prognosis & quality of life.
We got connected with the Trisomy 18 foundation after the loss of our baby girl. The support we have received from the foundation and T18 community has been so comforting through this tragedy. We can only hope that continued support of the foundation will help other families and babies in their time of need. We pray for advances in research and treatment for Trisomy 18.
I had a negative experience with this organization. With early medical intervention and therapies, many more children with T18 are living longer, healthier lives than in previous years, and a T18 diagnosis isn't as hopeless as it used to be. Unfortunately, most of the parents whose children are thriving are kicked out of the Trisomy Foundation groups, as I was. After I was removed, I emailed the founder with my concerns. She scheduled a phone meeting with me, then cancelled. I appreciate the support the Foundation offers to grieving parents, but my issue with this organization is that it pays to dominate the search engines, and continues to portray T18 in a hopeless light.
Foundation Staff 06/18/2019
When parents participate in the Foundation's online groups with motives not to answer the question asked by a fellow parent with their own experience but instead to share what they think God wants this parent to do and refer them to other groups in surreptitiously it can come across as hurtful and even shaming to those who don't share their same religious beliefs. Trisomy 18 diagnoses affect parents of all faiths and no faiths. We ALL love our dreamed-for child regardless of the medical decisions we must face making on behalf of our child. We ask group members avoid comments that "should, shame, stigmatize or suggest shunning" other parents in the midst of the most difficult, heartbreaking medical decisions of their lives and those posters ignore our requests after repeated warnings, we are left no option but to remove them from the group. In addition, to correct the poster's claim -- T18F has never and will never use Google paid advertising for search engine ranking.
Review from Guidestar
Here is a community you wish you would never be a part of, but once you become a part, you are so grateful for it. Victoria has turned her personal loss into a source of support for families around the world. When you find out your child has T18, you feel lost. T18F helps you find answers and hope. I am grateful for Victoria Miller and T18F.
I have experienced first hand how the Trisomy 18 Foundation has made a positive impact in families lives. As a genetic counselor, one of my roles is to connect families with resources, such as the Trisomy 18 Foundation, where they can go to get good, accurate information and support through such a difficult and unexpected time in their lives. It is invaluable to connect with families who have gone through a similar experience and be able to share. The Trisomy 18 Foundation also supports very important research involving the care and management of those with Trisomy 18. Overall, this organization does amazing things - both for families and for the scientific community.
Victoria and her staff are wonderful. The Foundation does so many things for families and children affected by Trisomy 18. It's wonderful to see an organization that truly cares about helping. If you are looking for resources related to Trisomy 18 I truly recommend the Trisomy 18 Foundation.
As a federal employee, I found this organization represented their constituents with passion. They are knowledgeable about policies and science that concern their constituents. Their advocacy is based on in-depth knowledge about Trisomy 18, its potential treatments and the needs of individuals and families affected by this condition
The Trisomy 18 Foundation has helped thousands of families for over 12 years now. The reach of the program is unbelievable and the comfort it provides for its families is unparalleled. I was blessed to have its founder, Victoria Miller, by my side when I lost my son 15 years ago. I don't know how I would have made it through those dark early days without the group of women I found within this foundation. I'm blessed to have them in my life and the world is blessed to have Victoria devoting her life to helping T18 families. A piece of my heart will always belong to the Trisomy 18 Foundation.
Trisomy 18 Foundation supports families and stays focused on research progress.
Victoria and the trisomy 18 foundation has been wonderful to me and my family. Not only do they provide amazing resources but they are so caring, even sent us a card after our sons death. Their website was our 1 # resource when we first found out about our sons diagnosis and all through the rest our pregnancy
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.
This has been such a wonderful and helpful organization. My daughter was diagnosed in utero with T18. With the internet being what it is, it's scary to go and search for T18 and not get all the facts straight. I had family that would tell me something that wasn't true because they found it on the internet. This page helped us with dealing with the facts and finding out more about this disorder. It has been a wonderful support since my daughters stillbirth. I find it a great resource and it helps us connect to others that are going through what we went through.
We felt like we had nowhere to turn when our precious Aaron was diagnosed with T18, then we found the Trisomy 18 Foundation. We learned so much and found that we weren’t alone. It helped so much to experience the love and support they provide and to be able to connect with others who had gone through what we were going through. My daughter and son-in-law have started a foundation that raises money for several organizations including the T18 Foundation. This has given them a way to celebrate Aaron’s life and encourage others to develop GRIT in response to difficult situations. Thank you Trisomy 18 Foundation. #AaronStrong
I tried joining the trisomy 18 foundation page after learning about my daughters FT18 diagnosis at 22 weeks pregnant. After answering questions and providing proof that I indeed had a trisomy 18 diagnosis. The administrator of the page who is also the highest level of of board staff for the actual foundation denied me and said I wasn't a good fit for the group and that I should find another group. Who says that? How is that the decision of anyone but myself! It's sickening that a young mother going through this would be denied based on one awful person! This foundation is a joke!
Review from Guidestar
This is not the organization for you if you choose LIFE for your baby. If you want information to support your decision to carry to term and provide interventions for your child, look for another organization, any organization but Trisomy 18 Foundation.
Review from Guidestar
We had never heard of T18 until our sweet baby boy Gage was diagnosed. He was a real fighter. We never gave up hope despite the diagnosis. We were blessed with our angel for 17 days and will be blessed forevermore. Online resources such as this remind us that we aren't alone.
The Trisomy 18 Foundation provides the information families need during a time of stress and fear and supports all choices with empathy and compassion. The Foundation creates a respectful community space for sharing and supporting one another while publicly advocating for families to medical/healthcare professionals.
This Foundation is amazing. They are focused on family support and support all decisions regarding care.
The Trisomy 18 Foundation provides amazing support to families affected by this condition. When we lost our son in 2009, we felt lost. There is so little information or support available on this condition and much of what is available is biased or misleading. Luckily, we found this organization, which helps all parents going through this terrible ordeal.
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.