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  

1 person found this review helpful

This is a great foundation .it helped us in many ways during the birth and death of our grand daughter and I will continue to support it no matter what.

 
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Rating: 1 stars  

I have not had a positive experience with this organization and would certainly direct other families just learning of a trisomy diagnosis to more informative and supportive groups: SOFT, Hope for Trisomy, etc. The website and blog boards have not changed in the 4.5 years since i have been navigating in the world of trisomy and don't understand why. There are supportive parents out there that want to help whether a child is surviving and thriving or your angel has gone home too soon. Accurate information can empower a parent in crisis to make the best decision for their family and I do not feel that this foundation provides the most current or accurate information. They have a website that provides information for parents who have lost a child but very few to no resources for those that children survive!

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

Emphasize accurate information; yes many of our children do not make it but there are babies surviving and thriving! It is so frustrating to see an organization that gets press paint suce a bleak picture that is not always the truth! This organization also receives thousands of dollars each year and it is never clear where the money goes and rarely are donations made to increasing awareness or for research

Was your donation impactful?

Unlikely

How likely is it that you would recommend that a friend donate to this group?

No

How likely are you to donate to this group again?

No

When was your last experience with this nonprofit?

2013

 
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t18f-admin (Nonprofit Staff) wrote:

It's always a challenge to balance the need for accurate, complete information about Trisomy 18 and the reality of it's devastating consequences and sharing information about and for families with living children coping with Trisomy 18. We hear you that you think we don't have that balance right from your point of view, and we’ll keep working on that. Fortunately, there are many community resources and disability groups that are available for parents with living, medically-fragile children, and so we don't try to duplicate those services but rather help with referrals to those other support groups. You mention 2 good ones we regularly refer to -- and we hope you'll honor them with positive reviews on their profile pages here at Great NonProfits.

Rating: 5 stars  

2 people found this review helpful

I cannot thank you enough, VIctoria, The Trisomy 18 Foundation and all the amazing Trisomy 18 parents for all of your support, and words of kindness and advice. My daughter was diagnosed with Trisomy 18, against the odds of what the doctors all told me, she did survive for almost 11 months... 11 months of my life that I will never forget and will treasure forever. The doctors had told me to take her home to die, when she 'surprised' them by surviving birth, but I chose to take her home to live. The Trisomy 18 foundation provides so much support while you are going through such a devastating period. They provide the facts, the real facts that yes many do not survive, but there are survivors.

Was your donation impactful?

Likely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

The Trisomy 18 Foundation provides an excellent resource for families who have received the devastating news that their child has Trisomy 18. Without such a resource, so many families would have a much more difficult time learning about the disease and a much more difficult time meeting other families who are living with the diagnosis. It provides the research but also offers the emotional support that one can after being through the situation first hand.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

 
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