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Trisomy 18 Foundation

Rating: 4.64 stars   80 reviews 8,775

Nonprofit Issues:

Health

Address:

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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More Info

810-867-4211
www.trisomy18.org

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Reviews for Trisomy 18 Foundation

Rating: 5 stars   Featured Review

5 people found this review helpful

Words cannot begin to express how deeply grateful I am that I found the Trisomy18 Foundation. When I was 6 months pregnant we discovered that my identical twin girls both had trisomy 18. One twin had obvious physical abnormalities that would be incompatible with life if no surgical intervention was done (which no MD would do once the T18 diagnosis was given), and the other showed no physical problems in utero, which led us to want to continue the pregnancy and give our girls every possible chance at survival. The foundation, first and foremost, allowed me to connect with other families who had been through similar experiences, which was huge for me because I felt so alone with this diagnosis- I had never heard of Trisomy 18 before and neither did any of my friends or family members. This proved even more important for me after we lost our twins after birth because what helped me most with the grieving process, even now- 7 years later, was connecting with other parents who had been through this too. Even now I have awesome lifelong friendships with moms who have gone through my similar experience. We contact each other when we need support, and we've been able to share our lives and experiences with each other as we deal with life going on after the death of our children.
And I cannot say enough about the foundations president, Victoria Miller. The care and compassion she gave is in our darkest and scariest times made such a world of difference. She even called me personally and gave me tips and advice on how to advocate for my baby girls when they were born. She was absolutely amazing!
Although my girls didn't live long in this earth after they were born, the Trisomy 18 Foundation has been a life saver for me and I am thankful every day that myself and countless other families out there continue to have it as a resource.

 
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Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

The Trisomy 18 Foundation provides a lifeline for parents faced with a new diagnosis of Trisomy 18. The executive director is knowledgeable, compassionate and unendingly dedicated to this important work.

 
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Role: General Member of the Public
Rating: 5 stars  

4 people found this review helpful

When my Brilyn was diagnosed with T18 at the tender age of 2 days old, we were devastated and felt so very, very alone. We searched for support and found Trisomy 18 Foundation. We were given the support and information we very much needed. It's been over 6 years, and I am so very thankful for the wonderful, unconditional support and tlc that our family has received.

 
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Rating: 5 stars  

2 people found this review helpful

The founder of this group has one of the biggest hearts!

 
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Rating: 1 stars  

4 people found this review helpful

This organization was selling Tshirts "to raise awareness for trisomy". I commented and asked what the money raised goes to, I was not given a response, and my comment was deleted, and I was banned within 5 minutes of asking. Please be very wary before giving them money. My daughter has trisomy 18, and I have not heard of this foundation helping out in any way. There are some other great trisomy 18 organizations to donate to, their finances are an open book, please do your research!!!!

 
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Joy, you have us confused with some other commercial company that has been selling these Tshirts you mention. We have never sold Tshirts to raise funds. We have also complained and asked questions of these people targeting Trisomy families with FB Ads and been blocked and ignored ourselves. Very frustrating. We made a public post on our Founder's personal profile on Nov. 15, 2015 to address this problem with our supporters and many had the same complaints. On your complaint about our finances -- we are an open book and on an annual basis have spent the funds to hire an independent auditor review our financial statements and have always gotten a clean audit. All the records of those individuals and small businesses funding the Foundation and all our financial statements are publicly available for your review in our annual IRS 990 filings through many public sites and Guidestar.org, including the names of all major donors or organizations who may have donated more than $5000 in any given year. As those filings will show – we have received no funding that your beliefs would find objectionable. We are a small nonprofit, both in terms of staff and overall annual funding. We hope as we have greater levels of funding, we can continue to expand our programs’ impacts in ways you can value and respect – if not for yourself personally, at least for the impacts it has in the lives of others who do value the role T18F has played in their lives. Although our services and programs are free to the public, they are not without costs. We do pay expenses to those who provide technical and professional services to the Foundation, but that does not include exorbitant salaries for our Founder or any staff. We can assure you that no one is getting rich working for the Foundation, far from it. We wish we could do more for more people, but with limited staff and funding, there will always be more that we wish we could do, and do better for many more people. But all of our public support goes directly to fund the costs associated with our programs, as our public filings demonstrate. We hope you will take the time to review those documents and get the facts. Our 501(c)(3) status does not allow us to give direct grants to individuals, but thankfully there are many local and state-based social services and disability groups that can have more direct impact on individual families’ in need and we regularly assist families in connecting with those resources. We are proud of all our families and their children -- whether they are currently living, passed from our lives or yet to be born. They are ALL Trisomy 18 families passing through different stages of their experience with Trisomy 18 an it's impacts. We hope you will take the time to write good reviews of the organizations you do like and support -- they deserve your support too.

Review from Guidestar
Rating: 1 stars  

3 people found this review helpful

Can someone please review financials. What has this foundation done for you?? Not a damn thing. They block families that share stories of hope and have living children. All donations go toward hefty salaries and "advertising" what are you advertising?? No clue. They abuse the sympathy of affected families and it's unfortunate that having a living trisomy 18 child we are stuck with an awful "foundation" to represent us.

 
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We are saddened that you are not receiving the type of support you might have wish for from the Foundation, but we do take some solace from the fact that your point of view is rare in our experience. That doesn't mean your views don't matter, just that it does not point to a systemic problem affecting lots of families. You clearly have some strong beliefs about not supporting abortion. We can assure you that we have never provided funding to any organizations that hold those beliefs, or to ANY other organization as we are not a grant-making organization. We also do not accept any funding from pro-life or pro-choice organizations or any organization with a political agenda. All the records of those individuals and small businesses funding the Foundation and all our financial statements are publicly available for your review in our annual IRS 990 filings through many public sites and Guidestar.org, including the names of all major donors or organizations who may have donated more than $5000 in any given year. As those filings will show – we have received no funding that your beliefs would find objectionable. We are a small nonprofit, both in terms of staff and overall annual funding. We hope as we have greater levels of funding, we can continue to expand our programs’ impacts in ways you can value and respect – if not for yourself personally, at least for the impacts it has in the lives of others who do value the role T18F has played in their lives. Although our services and programs are free to the public, they are not without costs. We do pay expenses to those who provide technical and professional services to the Foundation, but that does not include exorbitant salaries for our Founder or any staff. We can assure you that no one is getting rich working for the Foundation, far from it. We wish we could do more for more people, but with limited staff and funding, there will always be more that we wish we could do, and do better for many more people. But all of our public support goes directly to fund the costs associated with our programs, as our public filings demonstrate. We hope you will take the time to review those documents and get the facts. Our 501(c)(3) status does not allow us to give direct grants to individuals, but thankfully there are many local and state-based social services and disability groups that can have more direct impact on individual families’ in need and we regularly assist families in connecting with those resources. We are proud of all our families and their children -- whether they are currently living, passed from our lives or yet to be born. They are ALL Trisomy 18 families passing through different stages of their experience with Trisomy 18 an it's impacts.

Review from Guidestar
profile
Role: General Member of the Public
Rating: 1 stars  

2 people found this review helpful

Simply put, they use little or no money to helping anyone. They contribute to no research and in no way help Trisomy 18 children.

 
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We are saddened that you are not receiving the type of support you might have wish for from the Foundation, but we do take some solace from the fact that your point of view is rare in our experience. That doesn't mean your views don't matter, just that it does not point to a systemic problem affecting lots of families. You clearly have some strong beliefs about not supporting abortion. We can assure you that we have never provided funding to any organizations that hold those beliefs, or to ANY other organization as we are not a grant-making organization. Our financial statements are publicly available for your review in our annual IRS 990 filings through many public sites and Guidestar.org, including the names of all major donors or organizations who may have donated more than $5000 in any given year. As those filings will show. We are a small nonprofit, both in terms of staff and overall annual funding. We hope as we have greater levels of funding, we can continue to expand our programs’ impacts in ways you can value and respect – if not for yourself personally, at least for the impacts it has in the lives of others who do value the role T18F has played in their lives. Although our services and programs are free to the public, they are not without costs. We do pay expenses to those who provide technical and professional services to the Foundation, but that does not include exorbitant salaries for our Founder or any staff. We can assure you that no one is getting rich working for the Foundation, far from it. We wish we could do more for more people, but with limited staff and funding, there will always be more that we wish we could do, and do better for many more people. But all of our public support goes directly to fund the costs associated with our programs, as our public filings demonstrate. We hope you will take the time to review those documents and get the facts. Our 501(c)(3) status does not allow us to give direct grants to individuals, but thankfully there are many local and state-based social services and disability groups that can have more direct impact on individual families’ in need and we regularly assist families in connecting with those resources. We are proud of all our families and their children -- whether they are currently living, passed from our lives or yet to be born. They are ALL Trisomy 18 families passing through different stages of their experience with Trisomy 18 an it's impacts.

Review from Guidestar
Role: General Member of the Public
Rating: 4 stars  

4 people found this review helpful

My daughter Alyssa was diagnosed with Trisomy 18, six years ago. We quickly looked for information and what we found on most sites was discouaging. The Trisomy 18 foundation provided us with hope. The information was accurate, encouraging, and clear. Alyssa has full Trisomy 18 and will celebrate her seventh birthday in two weeks. I am an advocate for my daughter and often direct medical professionals and others to the Trisomy 18 foundation site. It's important that medical providers and families to know that these babies can survive and lead meaningful lives. We have a blog wndrfllymde@blogspot.com , with a Trisomy 18 diagnosis there is still a world full of possibilities. Thank you Trisomy 18 foundation.

 
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Rating: 5 stars  

3 people found this review helpful

When my daughter was first diagnosed in utero with T18 I had no idea what it was. My husband and I quickly searched online for anything we could find to obtain more information. We came across this great organization and learned so much. The comforting thing was that there were many families at different stages and we spent hours pouring through their individual stories. I'm glad that this organization provides valuable information for families.

 
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Rating: 1 stars  

8 people found this review helpful

This foundation does not support families of living children. They are focused on eliminating trisomy 18 which includes funding for abortion supporting organizations. Donations made do not help families with living trisomy 18 children in any way. The "founder" and her insiders are getting rich off donations while we fight all alone for care for living children. I'm ashamed to have such an awful "Foundation" represent trisomy 18.

 
Flag review

We are saddened that you are not receiving the type of support you might have wish for from the Foundation, but we do take some solace from the fact that your point of view is rare in our experience. That doesn't mean your views don't matter, just that it does not point to a systemic problem affecting lots of families. You clearly have some strong beliefs about not supporting abortion. We can assure you that we have never provided funding to any organizations that hold those beliefs, or to ANY other organization as we are not a grant-making organization. We also do not accept any funding from pro-life or pro-choice organizations or any organization with a political agenda. All the records of those individuals and small businesses funding the Foundation and all our financial statements are publicly available for your review in our annual IRS 990 filings through many public sites and Guidestar.org, including the names of all major donors or organizations who may have donated more than $5000 in any given year. As those filings will show – we have received no funding that your beliefs would find objectionable. We are a small nonprofit, both in terms of staff and overall annual funding. We hope as we have greater levels of funding, we can continue to expand our programs’ impacts in ways you can value and respect – if not for yourself personally, at least for the impacts it has in the lives of others who do value the role T18F has played in their lives. Although our services and programs are free to the public, they are not without costs. We do pay expenses to those who provide technical and professional services to the Foundation, but that does not include exorbitant salaries for our Founder or any staff. We can assure you that no one is getting rich working for the Foundation, far from it. We wish we could do more for more people, but with limited staff and funding, there will always be more that we wish we could do, and do better for many more people. But all of our public support goes directly to fund the costs associated with our programs, as our public filings demonstrate. We hope you will take the time to review those documents and get the facts. Our 501(c)(3) status does not allow us to give direct grants to individuals, but thankfully there are many local and state-based social services and disability groups that can have more direct impact on individual families’ in need and we regularly assist families in connecting with those resources. We are proud of all our families and their children -- whether they are currently living, passed from our lives or yet to be born. They are ALL Trisomy 18 families passing through different stages of their experience with Trisomy 18 an it's impacts.