Trisomy 18 Foundation

Rating: 4.64 stars   80 reviews

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: 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
Rating: 5 stars  

3 people found this review helpful

I must say your organization thus far helped me in many different, my Niece Ava Grace was diagnosed with Trisomy 18 and was born a sleeping Angel on February 10, 2014. Your organization helped in ways of how to give support through the grieving process , I didn't know much of the diagnosis you all provided so much information and helped me to be a support to our Angel Mommy which is my Baby Sister, living this experience with her changed me in so many ways and has changed our life's for ever. Every life counts, everyone deserves a chance. God bless every single person in your organization and May God Bless all of our Angel Parents. And thank you for answering God's calling and for saying yes to life.

 
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Rating: 5 stars  

3 people found this review helpful

I lost my daughter to trisomy 18 on November 25th 2009. I delivered her stillborn 3 days before her due date. The trisomy 18 foundation has helped me on so many levels. It's comforting to know that I'm not alone. You always think "that can't happen to me" , but it most definitely can. I wish more people knew about trisomy 18 and this foundation.

 
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Rating: 5 stars  

3 people found this review helpful

I want to thank the organization for helping me during the most wonderful and difficult time of my life. I was pregnant with twins and found out we were having a boy and a girl. Life couldn't be better. During the sonogram I noticed one babies head was bigger. We found out a week later that our little girl had a problem with her heart. We were told to abort or entire pregnancy or try to just abort Isabella. I was appalled by what the doctor said. After seeing a wonderful pediatric cardiologist she sent us for genetic testing. We learned the day before Thanksgiving that Isabella had trisomey 18. We knew nothing about this. Thanks to this organization my husband and I learned so much. Isabella and Joseph were born at 36 weeks. Isabella was first at 2 pounds 2 ounces and Joseph second at 4 pounds 3 ounces. Isabella survived 55 beautiful minutes and received her wings in her mommy and daddy arms. Joey is now 17 months old and doing great. He spent a short time in the NICU and has an angel always watching over him. My husband and I have had a hard time dealing with her loss. However thanks to everyone involved here we are not alone and are very grateful. Thank you, The Pizzonia family.

 
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Rating: 5 stars  

2 people found this review helpful

I am the Grandmother of the most beautiful Granddaughter ever, though she was only with us for one month, the impact she had on myself and my family can never be put in to words. this Foundation was and still is an amazing gift for families going through the struggles of having a child diagnosed with Trisomy 18. They helped me with so many questions and made me feel like I was the only one they were helping but wasn't alone at the same time....They genuinely care for our families and our babies and our hearts

 
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Rating: 4 stars  

2 people found this review helpful

My husband and I were devastated by a prenatal diagnosis of Trisomy 18 for our daughter. In spite of the information we received from doctors, we weren't really sure what it meant on a personal level. The internet can be a scary place when you're trying to get accurate and relevant information about health issues. I found great comfort when I discovered the Trisomy 18 Foundation website. In addition to the clinical information about the condition, the personal stories by community members made the site a valuable resource. It helped me to feel less alone with this grief.

 
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Rating: 5 stars  

3 people found this review helpful

My daughter Adyssun Rae was born August 2, 2010 with T18. I had 7 previous miscarriages before Adyssun and despite the medical professionals advice to terminate the pregnancy my husband and I decided to proceed and let nature take it course. I had to fire two OB's that left me in tears after each doctors visit. After many interviews with hospital board members and experts, we finally found the OB that was supportive and made us feel comfortable with our decision. We were advised of our incredibly low chances of of our baby reaching 1 week old, if she was even to survive the birth. Adyssun made it through the birth and lived for 6 months. The 6 months that my husband and I cared for her was the most special time of our lives. There are no words to describe the joy we felt caring for our very special baby and witnessing the miracle of life daily. Our beautiful Adyssun was tiny and mighty. Our baby bonded our entire family and changed each of our lives for the better...forever. It's true our story is bitter sweet but it is our most cherished life experience.

When was your last experience with this nonprofit?

2014

 
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Rating: 5 stars  

2 people found this review helpful

My second son was diagnosed with Trisomy 18 and this was back in 1999. My former husband and I were so unprepared and miss informed by well meaning doctors who really did not know how to help except to suggest ending the pregnancy. That was such a sad and terrible time. The Trisomy 18 foundation makes a real difference to parents facing having a baby with this disorder. I have been blessed by the stories of others and have found a special community of understanding here.

 
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Rating: 5 stars  

2 people found this review helpful

This foundation has helped me. Three months ago I gave birth to a beautiful baby girl. She was small but I thought nothing of it. Two weeks later I was told she had Trisomy 18. I nor my husband heard of this disease. The doctors said she wouldn't live to see her first birthday and we were devastated. She is now 3 months but doing poorly. She can leave me any day now. This organization has given me the strength to spread the awareness because a lot of people never heard of this disease. I thank them for what they are doing because it is helping me through this tough time.

 
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