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: 4 stars  

1 person 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: 1 stars  

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.

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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.

Rating: 5 stars  

1 person found this review helpful

The Trisomy 18 Foundation was established shortly after we lost our daughter to the disorder in 2003. I have followed their efforts for many years, and have often thought how much help such an organization would have been during our time with our daughter. Their work is important and life-changing!

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Rating: 5 stars  

1 person found this review helpful

Our son was born with Trisomy 18, 36 years ago. Back then there was no "foundation", no real place for new parents to find out much of anything. Back then, we were told it doesn't usually happen to young mothers (I was 23), that the babies were usually girls (our's was a boy), that they are usually miscarried (not), and that they usually didn't make it past the day they were born (our son lived 5 months 10 days). We were the first parents to be taught how to gavage feed our baby at the Foothills Hospital in Calgary Alberta. We knew nothing. To have a Foundation available for parents of children born with special characteristics is more invaluable than you know. Unless you have been a parent who walked around in a daze because there was virtually no support system, you have no idea how critical it is to have a Foundation that supports you, educates you, and comforts you when needed. The Trisomy 18 NFP is vital to parents and their families.

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Rating: 5 stars  

1 person found this review helpful

Our first child was diagnosed at 24 weeks gestation after a battery of tests. Being our first child, first grandchild for my in-laws, it was crushing and devastating news. We had never heard of such a thing as Trisomy 18 and thought it was something we would go through alone with many questions going unanswered. However, this group has made a world of difference in our understanding, healing and growth. We now have two beautifully healthy and happy children but they know all about their big sister. We celebrate her birthday every year and use her name daily. Thank you so much.

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Rating: 5 stars  

1 person found this review helpful

I lost my baby girl to T18, a syndrome I'd never even heard of before. Through the foundation I gained a knowledge and respect for those affected by it. Not everyone's choices are the same but require respect and understanding. The foundation is there to help those in need of support, and recognition of the efforts of the volunteers and expert advice that is at hand should not go unnoticed. Wherever possible I would like to raise awareness and believe this award would be extremely beneficial in doing just that.

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Rating: 5 stars  

2 people found this review helpful

I am the mother of a baby girl who was diagnosed with Trisomy 18. I had Paige Elizabeth Russell on June 11, 2013 via C-section and two days later found out she had been diagnosed with Trisomy 18. We took her off her ventilator on June 26, 2013 and lost her. The people with the Trisomy 18 Foundation have been amazing!! The little things they do, even just talking to you, helps me a lot. I've been dealing with Kristine Shaughnessy and I couldn't have asked for a better person to talk to. I highly recommend this foundation to anyone.

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

Not a thing!

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

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Rating: 5 stars  

2 people found this review helpful

I found this page after the loss of my niece. I found comfort in seeing pictures of the other babies, knowing we are not alone in our loss. I enjoy reading about other families, sharing there joy and sadness. This page serves to educate people on something that you normally wouldn't hear of till it hits close to home. Great job! Keep it up!

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

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Rating: 5 stars  

2 people 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.

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

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Rating: 5 stars  

2 people 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.

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

Work on increasing fund raising efforts at all levels.

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

Was this review helpful?