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Review for Trisomy 18 Foundation, Woodbridge, VA, USA

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

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Role:  Donor

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.