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September 22, 2013
1 person found this review helpful

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September 22, 2013
1 person found this review helpful

My Daughter - in - law lost a child to Trisomy 18 before she met my son. She still suffers from her loss and always will. I started reading the Facebook articles on the these families. I can't stop. My Heart aches for them. I am so very greatful that I had three healthy children. Most people I s/w don't know what it is, so I can at least spread the word. If you are as lucky as I was, please look it up and do the same. Thank you for listening.

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Will you volunteer or donate to this organization?

Likely

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

A lot

When was your last experience with this nonprofit?

2013

September 21, 2013
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September 21, 2013
1 person found this review helpful

My father was diagnosed with pancreatic cancer and we wanted to have an ultrasound done so we could show him his grandson. Rather than having happy news, we were told that something was wrong with him and were sent to have further test. I had to cancel the day we were to have our test because my dad passed away that morning. We had to wait two more weeks to be rescheduled and when we finally did make it the genetic Dr he informed us our baby had Trisomy 18 and we should abort. We left his office in a fog and drove straight to my OB and he said he would support our decision to carry our baby full term. He suggested I go to your website for research and support in making an informed decision. Not only did your website help to inform, but it allowed me the support of others. We felt alone and lost, not fully understanding what to expect or do. Even though we could not change our outcome and we carried him 37 weeks and he lived 21 minutes, I felt more in control knowing i had a better understanding of what we were about to face. We would not change our decision to carry him full term and are grateful that we had your website to give us support and the information needed. My journey did not end there as it is my hope that more information is known about the cause of trisomy 18 and the support continues....I want to do that for my baby Thomas and all of the other parents that travel this road..they are not alone.

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How would you describe the help you got from this organization?

Life-changing

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?

2013

September 21, 2013
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September 21, 2013
1 person found this review helpful

In the year 2005 when our son Elijah was born with Trisomy 18, the Trisomy 18 Foundation was virtually the only organization that I could find specifically to help parents and families of trisomy babies and children. All the other references online coldly and scientifically spoke about this disorder. Other then help from The Lord , this was the only place I could read about other families and write about our family's experience with Elijah. It was definitely beneficial in my healing process and may God bless you and your endeavors forthcoming.

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How would you describe the help you got from this organization?

Life-changing

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?

2010

September 21, 2013
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September 21, 2013
1 person found this review helpful

My brother and sister in law have a son, baby Peter who was a trisomy 18 baby. He lived a very short time. We had a brother who was also a special needs child who died at age 11. We had a cousin with MS.
The Trisomy 18 Foundation has done a tremendous job supporting the needs of a diverse group
of trisomy 18 children and families. There are children who like my nephew pass on early. They leave behind the broken hearts that need mending. Trisomy 18 Foundation is very good at making these short lives count for something and have genuine meaning with the tributes on the legacy page. They offer support to families in mourning with other families who have been there and offer true solace and compassion. They offer awareness of the medical condition of Trisomy 18. And they pass along hope and lift up all of us with stories of those affected who are beating the odds and living longer lives. The collective experience of the families gifted with a Trisomy 18 child is channeled productively to three advisory councils, Family, Medical and Research which brings first hand knowledge and experience to families in need, and to professionals who are aided by the insights, knowledge and wisdom acquired. This foundation does important work. All advisory councils do valuable work. Especially important is the guidance that the Trisomy 18 Foundation offers to help to determine what areas of research are needed most to help combat and finally conquer this genetic disorder. I endorse their efforts highly. -James R. Peterson, P.E./M.B.A.

Ways to make it better...

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

Work on increasing fund raising efforts at all levels.

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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?

2013

September 21, 2013
1 person found this review helpful

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September 21, 2013
1 person found this review helpful

The Trisomy 18 foundation is the place where went when my world spun out of control after receiving a prenatal diagnosis of full Trisomy 18 during my first pregnancy. I was shattered and had more questions than I knew what to do with. This foundation led me to all the facts I needed to know. It led me to communities of families that knew what I was going through. I made friends that have impacted my life forever. They helped me write a birth plan after debating comfort measures versus life saving procedures. They helped me find the best doctors to work with. And they helped me with the tools I needed to facilitate the grief I have been enduring since the day my daughter passed away. Thanks to the Trisomy 18 Foundation, I wasn't alone in my journey. I have pictures, memories and friends to last the rest of my life. And my daughter, Alessandra, changed my life forever. I'm so thankful to the foundation for doing what they do. It made all the difference in my life.

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How would you describe the help you got from this organization?

Life-changing

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?

2012

November 14, 2012

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November 14, 2012

When my second daughter was born, we had no idea she had Trisomy 18. When she was diagnosed, I felt lost, alone and devastated. The Trisomy 18 Foundation was there for me to create a Legacy page, and to lean on. I continue to get support from this foundation even now... almost three years later.

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Will you volunteer or donate to this organization?

Unsure

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

A lot

When was your last experience with this nonprofit?

2012

November 13, 2012

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November 13, 2012

When our daughter was diagnosed with Trisomy 18 in the 20th week of our pregnancy we were devastated, confused and overwhelmed. The Trisomy 18 foundation was there for us with immediate support. I could not have made it through the rest of my pregnancy without having other moms to talk to who were going through the same thing. The odds of having a baby with Trisomy 18 are small and therefor it is hard to find people who can understand all the complex issues and emotions. The support group message boards enabled me to talk with people who had the same questions, concerns, hopes and fears as myself. I was went from feeling overwhelmed and helpless to feeling more in control and fully informed of the possibilities and choices I had as a parent. I would have never thought of making a birth plan for example, and asking for certain considerations from the maternity staff. I feel fortunate to have had 3 days with our daughter. The foundation also provides a place for extended family to learn more about the condition and to show support.

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How would you describe the help you got from this organization?

Life-changing

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?

2011

November 13, 2012

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November 13, 2012

I have known this non-profit since it was just a spark in the CEO/Founder's eye. I found out in May of 2003 that the baby girl I was carrying had a genetic condition called Trisomy 18. Not knowing anything of this diagnosis, I searched the internet and came across Victoria and her e-list. I was also about the 50th person to ever join their website, just after they started. I can tell you without hesitation that I have no idea how I would have made it through my pregnancy, my daughter's short life, and eventually her passing without the information provided, knowledge offered, and support so freely given. In a world where people can be so self centered, the love and support of the ever-changing clientele at the website, the sharing of our stories, and often just knowing that there is someone else out there going through something similar (because we all know that every story is completely unique) can be life changing. I love that Victoria has turned the loss of her own precious child to this diagnosis into a force for research, support, information... When my daughter passed away, I asked for donations to this foundation in lieu of flowers, I believe so strongly in it's mission.

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How would you describe the help you got from this organization?

Life-changing

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?

2011

November 13, 2012

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November 13, 2012

When i lost my son, at 24 weeks, i found myself in depth of pain that overwhelmed all around me, move on.... it left me feeling all alone, with no one i could turn to, i sought out information, something to ease the pain, more understanding for the why my baby, I found the Trisomy 18 Foundation on line, the first words were, we are sorry you have had to seek us out, i knew I had found someone who understood. At first, just reading the foundation gave me solace, I was normal, I was not the only person to feel this way, then from my first post, being offered support and comfort, from others who knew and understood my pain, thoughts and feelings, it ws the only place I felt safe to speak freely, without judgement, or criticism, surely you dont feel that bad?? The support continued with a subsequent pregnancy, offering yet again, my worries and fears were not unfounded, and all support I needed. I learnt about the thing called trisomy 18 that took my son , a better understanding of the condition, I learnt about prenatal testing, and choices that my own dr's did not offer, I gained life long friends with people who truly understand that the loss of our babies, never leaves you. I would recommend the Trisomy 18 Foundation for anyone on receiving the possible or definate diagnosis of Trisomy 18 in their child, I dread to think where I would be or how I would have coped without the foundation, I will be grateful forever.

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How would you describe the help you got from this organization?

Life-changing

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?

2012

November 13, 2012

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November 13, 2012

As a colleague in the field of prenatal testing and genetic conditions, I have had the true honor to interact with the Trisomy 18 Foundation on a regular basis. They serve a wide array of stakeholders, including patients, families, key opinion leaders, academics, industry and policy makers. The T18 Foundation leadership is organized, thoughtful and comprehensive in providing services and tools that help mothers and families coping with the pre-diagnosis, diagnosis and decision-making post-diagnosis of Trisomy 18 and Edwards syndrome. I truly consider them to be a GREAT Non-profit, and I hope you will, too, after learning more about their offerings.

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How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

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