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2017 Top-Rated Nonprofit

Trisomy 18 Foundation

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Birth Defects & Genetic Diseases Research, Down Syndrome, Health

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.

Community Stories

101 Stories from Volunteers, Donors & Supporters

5

Client Served

Rating: 5

The foundation was there for our family when we needed them the most - at diagnosis. The wealth of information and support resources gave us a handle of the Full Trisomy 18 diagnosis 7 years ago. The foundation continues to be a source of information and support for our family. What I find to be inspiring of The Trisomy 18 Foundation is their commitment to push and advocate for scientific research into Trisomy 18. As parents of a child with Full Trisomy 18 & also trained scientists, we greatly appreciate what the foundation stands for & the goals they fight for. The foundation is dedicated to push for much anticipated scientific breakthroughs in Trisomy 18 research. Three cheers to this wonderful professional & compassionate organization that keeps me hopeful that in the future, a Trisomy 18 diagnosis will have a better prognosis & quality of life.

5

Client Served

Rating: 5

In 2005 I got the devastating news that the child I was carrying had T18. I had never heard of this, nor had any of my friends or family members. The doctor I had was nice, but did not provide helpful information on how to prepare for what was to come. It was a devastating time, and the only place available for me to turn to for help was the Trisomy 18 Foundation. Though it was the most difficult time in my life, I'm so thankful I had a safe, understanding and compassionate place to turn.

4

General Member of the Public

Rating: 5

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.

5

Client Served

Rating: 5

Our daughter was diagnosed with trisomy 18 at just 15 weeks into my pregnancy. We were completely devastated, but this organization makes you realize you are not alone. It's a place that you can go to where others understand completely how you feel. It also helped our family & friends learn more about trisomy 18.

4 Lisa397

Volunteer

Rating: 5

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

4

Client Served

Rating: 5

As a grandmother this diagnosis tears at your heart for your grandchild and even more for your children facing the biggest challenge a parent can. For months I visited the site to gain knowledge which I did but also came away with peace. Not in understanding the whys...but in finding solace in knowing all these emotions are shared.

4 Carrie67

General Member of the Public

Rating: 5

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.

4

Client Served

Rating: 5

Our daughter was diagnosed with T18 after markers were noticed in our 20 week ultrasound. Nothing could have prepared us for what T18 meant for our family better than this organization. The information shared via message boards with other parents, and online resources cannot be found anywhere else online or in most communities. The website helps guide parents/family for the decisions that they will face from the time of diagnosis until after the birth of their precious child. Equally as important, each person involved with Trisomy 18 Foundation seems to have also been touched by Trisomy 18 in some way. This is so crucial in helping people heal! It is hard to truly empathize with someone who has never had to deal with T18 if it is something you have never dealt with yourself.

2

Volunteer

Rating: 4

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.

4

Volunteer

Rating: 5

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.

3

Volunteer

Rating: 5

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.

3

Volunteer

Rating: 5

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.

3

Client Served

Rating: 5

This organization has been a blessing to me since the prenatal diagnosis of our little girl with T18. The information was factual yet uplifting, it helped my husband and I have hope and choose to carry to term. Our "Maggie" was born at 39 weeks gestation and was in our arms when she passed a short time later. The foundation gave us the courage and support to travel this scary road allowing us the opportunity to receive the blessings that came with traveling this road. Thank you to everyone!

3

Volunteer

Rating: 5

8 Yrs ago I lost my first born daughter to T18. At the time I didn't know there were organizations out there. Instead of the doctors giving support they wanted to just turn me away. Despite what doctors wanted me to do I carried my baby girl to term but she decided she wanted to fly with the angels. With no support from doctors We had a lot of family support but they couldn't give us answers and even begin to understand our ordeal. But through out these years my loss has given me strength. I just barely recently found this organization and though it has been many years since my daughters passing I feel even more comfort in knowing that families can get the support they need. Thank for doing all the wonderful work you do for these families...

3

Volunteer

Rating: 5

The Trisomy 18 organization was a huge help to my family when our daughter, Alaina Joy, was diagnosed at 17 weeks gestation. Through the community I was able to gain knowledge of what may come of my daughter's life. I was able to make sound decisions as far as birth plans, and hospital care while keeping in mind that her life was going to be brief. I'm thankful for the Foundation for providing me with so much information to help make Alaina's 3 days on Earth the best 3 days in a very gut wrenching situation. We are forever family, as we are all connected by 1 extra chromosome. Thank you.

3

General Member of the Public

Rating: 5

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.

3

Client Served

Rating: 5

Our daughter, Gina Prayer, was diagnosed with Trisomy 18 when I was 21 weeks pregnant, 11 years ago. The doctors didn't know much about the condition, and of course, neither did we. Trisomy 18 Foundation gave us lots of very useful information, advice and, most importantly, support. Throughout Gina's short life, the foundation (support group as it was then) continued to provide much needed support and sound advice on how to make her as comfortable as possible and how to deal with the grief while still caring for our beautiful little girl. Trisomy 18 Foundation was our life line throughout our daughter's life and through the pain of her death. We couldn't have survived it without the information, advice and help that we received from this most wonderful organisation.

3

Client Served

Rating: 5

When we found out in March of 2013 that our unborn daughter, Hannah, had Trisomy 18 we were - needless to say - devastated. I immediately took to the internet to find out more information and quickly landed on the website for the Trisomy 18 Foundation. I signed up for a forum and within 24 hours was personally contacted by a staff member, Kris Shaughnessy and offered links to so much valuable information and further support, including a private social media group for T18 parents to share openly and candidly, gain support and information and form relationships with other parents/families walking this same road. Kris as well as Victoria Miller, the founder, Executive Director and President of the Board regularly and frequently interact and communicate personally with the families in that group offering sincere support and helpful information and direction. The Trisomy 18 Foundation also is always quick to provide and distribute new, groundbreaking and/or encouraging news, resources, or any information that might be of help and interest to families affected by Trisomy 18.

Our daughter, Hannah, was stillborn at 31 weeks. Having had the chance to learn so much about Trisomy 18 and what to expect from both the organization and from other families in the support groups it created, maintains and facilitates made our darkest hour as bearable as it could be. I was so thankful to know that I had the support and resources of this organization available.

I am a firm believer that the work this organization does truly has the best interest of those it serves at heart and does everything possible to make this heartbreaking, difficult journey just a bit easier and manageable for the parents/families of T18 babies!

3

Client Served

Rating: 5

The first time my husband I heard of Trisomy 18 was when our daughter and her husband were told, after a routine blood test and then other tests, that their baby had Full Trisomy 18. Not knowing what that was, we turned to the WWW. We found Trisomy 18 Foundation. What a blessing they were and are. They provided answers to our questions and kind, caring support. Because of this wonderful organization, we found we were not alone. We've been able to read about other families who are dealing with this devastating condition. Our granddaughter, Elizabeth Ann Walsh was born into the arms of God, April 18, 2011.
Our hearts still ache at her loss, but I felt and still feel that her "being" needed to have a positive meaning. Earlier this year, I created a quilt in her memory and donated it to Trisomy 18 Foundation as a fundraiser. We have been working with Kristine Shaughnessy. We cannot thank her enough for all she has done/is doing to help and encourage us. Her thoughtful, kind, caring help goes above and beyond.
Trisomy 18 Foundation has featured our quilt "A Quilt for Elizabeth" on their FB page and web page. They have given us the support and encouragement we needed. They are the BEST!

4 Kristy R.

General Member of the Public

Rating: 5

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.

4 Jolee C.

Client Served

Rating: 5

After my son's Trisomy 18 diagnosis, my husband and I were devastated. We live in a small town and our doctor was very supportive, but there were not any other T18 families in our area that had carried their child to term. I had no one to get help from who had been there. The Trisomy 18 Foundation provided huge amounts of information, but more importantly for me, the chance to connect with other T18 families. I was able to get advice and ask questions in a way that I couldn't do face to face. I could cry and take an hour to post a question without feeling rushed because someone was waiting on me. I could read other posts and get information. I could get information that was too heartbreaking or upsetting without verbally having to say these things. The information I gained from the foundation was instrumental in guiding our decisions and planning for our son. I was able to get advice from other moms who had been where I was currently at. Even though my son is no longer with us, I still use the forum to offer support to others. The Trisomy 18 Foundation provides such a wonderful service to so many who desperately need help during a heart wrenching time in their lives.