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Twin to Twin Transfusion Syndrome Foundation, Inc.

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Nonprofit Overview

Causes: Health, Specifically Named Diseases, Specifically Named Diseases Research

Mission: An international nonprofit organization solely dedicated to providing lifesaving educational, emotional, and financial support for families, medical professionals, and other caregivers before, during and after a pregnancy diagnosed with twin to twin transfusion syndrome. Dedicated to saving the babies, improving their future health and care, furthering medical research, providing NICU, special needs and bereavement support, and keeping families together the way twins are meant to be.

Community Stories

47 Stories from Volunteers, Donors & Supporters

1

Client Served

Rating: 5

My husband and I are new parents to healthy twin boys thanks to the twin to twin transfusion syndrome foundation. We received a plethora of information and resources that helped us choose the best options for our family. TTTS foundation helped us get to the best doctors. I don't know what we would've done without them.

1 Amanda167

Client Served

Rating: 5

I stumbled upon this site after I found out I was having twins. I thought to myself how sad it is for these people who suffered through such a horrible disease. Then around 20 weeks, I started to "balloon" and went in for a checkup to find that I too had TTTS. I was distraught, saddened, and felt helpless for my unborn babies. I found the site again and read it ALL. I found the checklist,the questions to ask your doctor, and the symptoms I might endure. I felt it prepared me for the unexpected and gave me a profound sense of hope and courage to fight TTTS! Thank you to this foundation. You do so much for others,you are MORE than deserving of more exposure! Give others hope to continue to care for the unborn!
The Chase Family
(Twins that were helped through the knowledge of the foundation: Cody James and Christian Wilson- born at 33weeks due to complications of TTTS in 2012, now thriving 2 year olds)

Client Served

Rating: 5

TTTS foundation was god sent for us. After two miscarriages, my husband and I were very excited about our third pregnancy for our first child and we were super excited when we learned that we were going to have twins. However, it was short lived as I was diagnosed with TTTS during the 16th week. We were shattered. Doctors didn't know what options we had and they went to the extent of discussing the option to abort. It was one of the darkest day in our lives as we just didn't know what options we had. Then we found Mary & TTTS. No exaggeration here at all, she spent 3 hours on the phone with my husband and I explaining what TTTS is and what options we have. It changed the course. With help from TTTS every step of the way, I got surgery done from Dr. De Lia during the 18th week. Our twins boys will be 5 soon. Happy, healthy & full of energy.This wouldn't have been possible without TTTS and Mary. Simply the best support system you can find for TTTS. They are great and we are for ever in debt for the joy they brought to our lives.

Candi O.

Client Served

Rating: 5

My sons were born at 30 weeks from a TTTS pregnancy. Everything I learned about TTTS, I learned from the Foundation. The Foundation does a fantastic job of supporting families and helping them through all stages of TTTS. It's information helped me be prepared for the possibility that one or both of my sons would have special needs (one did), and it gave me a community of people to talk to and work with. Mary Slaman, the director, is amazing and I cannot say enough good things about her.

Ashley117

Client Served

Rating: 5

When I was told my twin girls had TTTS I was terrified and clueless. Mary showed me support and provided education about this devastating news. I was put in contact with other moms going through the same journey. Without this support I don't know what I would've done. When my donor twin Violet didn't survive the surgery, the foundation provided unwavering support and grace. When my survivor, Valerie, was born at 25 weeks they did no less. Mary always made sure I had the materials and support I needed. At the darkest and lowest points in my life, the TTTS foundation provided hope, education, and choices.

Client Served

Rating: 5

The TTTS Foundation was the best discovery I made during my pregnancy and I truly believe is one of the biggest reasons that I am still pregnant with healthy Triplets, and about to give birth in the next few weeks.
I live in NYC where there is some of the best care in the world, and my specialists advised me of potential issues with the identical twins I was carrying. However it wasn't until I discovered the TTTS Foundation website where I was truly able to understand the disease, the possibilities, the treatments and the outcomes. Upon being diagnosed with TTTS at 14 weeks, Mary was the first person I called.
As the leader of this organization, she is kind, patient, generous, positive, caring and just has so much knowledge to share, which helped my husband and I (and ultimately our 3 babies) get through this difficult time. If it wasn't for Mary I would not have known very much about the disease or the treatments. My doctors were constantly impressed with my understanding and decisions and I can only thank Mary for giivng me the information & support to help save my babies.
My husband and I are eternally grateful and we plan to do all that we can personally to help the TTTS Foundation, and other families, in the future.

Client Served

Rating: 5

I am currently 28 weeks pregnant with identical twin girls. Our doctor began educating us early on, that in less than 20% of identical twin pregnancies, there is a chance that the twins can develop a condition called Twin-to-Twin Transfusion Syndrome (TTTS). Essentially, this is an unequal share of the placenta, undetected or un-diagnosed can be fatal to one or both babies. At 14 weeks, we were referred to a maternal fetal medical doctor for bi-monthly sonograms to ensure the babies are healthy and not at risk of TTTS. At my 18-week sonogram, my maternal fetal medical doctor saw some alarming differences with the twins compared to previous scans and he quickly referred us to specialists in Houston, Texas, for further examination and evaluation.

After 4 weeks of sonograms, echo-cardiograms, evaluations and expert opinions, I am finally released back to my home. I have maintained stability in Stage 1 of TTTS. This condition can progress very quickly, or it could actually maintain in Stage 1, or can actually correct itself in less than 10% of cases. I continue to see local specialists to monitor the babies.

Without the help of the TTTS Foundation, we would not have had the additional support and education to act fast for the continuous monitoring of our identical twins.

Client Served

Rating: 5

Mary with the TTTS foundation helped me not just financially,but for my emotional needs. The support from this foundation is extremely helpful with education and resources for this disease . I don't think I could have made it through if not for Mary and the TTTS foundation, I will forever be grateful!

Heather195

Client Served

Rating: 5

The TTTS Foundation has been nothing short of a miracle in our life. We have just got in contact with this foundation and the support and love that this organization represents is incomparable.

Client Served

Rating: 5

Last year this time I was in a high risk pregnancy. I was carrying quadruplets and two of the babies were at risk for twin to twin transfuson syndrome. This foundation and the leaders and volunteers provided insight, education, care, and compassion throughout my entire pregnancy as well as after the babies were born.

Jackie V.

Client Served

Rating: 5

Words cannot describe how thankful we are for Mary and the TTTS Foundation. Mary helped save our girls lives, that is something that we will never be able to repay her for. Mary was extremely informative, a wonderful support for this horrible disease. We talked nearly everyday during my pregnancy after diagnosis. Mary and the foundation made it possible for us to travel from Michigsn to Florida to see the doctor that we knew would save our girls lives. The work that Mary does is from the heart, she is a godsend and will continue to help Mothers and help save their children. We are forever grateful and will continue to support this amazing organization!:)

Thank you so much Mary!

Ryan53

Client Served

Rating: 5

The foundation was more than helpful! Without this foundation we don't know if we would have our baby girls with us today! I will never be able to thank you enough!

Stephanie79

Client Served

Rating: 5

The Foundation is an outstanding organization. I have always worked in the non-profit sector and I have never seen an organization so clearly focus and work toward their mission. I am also impressed by the multitude of people that receive personal care from this small organization. When we were going through TTTS the Foundation was our only hope. My twins would not be here today if it wasn't for the support, information and the work of the Foundation. I was a client served, I have volunteered and have given money to this organization. I will continue to volunteer and donate to this organization so that families and doctors can get the support and information they need to fight this disease.

1

Client Served

Rating: 5

When my daughter called and said the twins had TTTS and that they had to go to Florida "like yesterday", I was online and found TTTS Foundation read some of the information then called Mary. I asked if this was a Christian based organization, she said "yes". I explained our situation and she gave me the doctor's name and phone number in WI. Mary answered the phone when I made the first call, she put me at ease about our options and gave us information. I called the doctor and he answered the phone. I put my daughter on the phone with him. I believe God has placed Mary on earth for the purpose of helping others with the same dilemma. I was impressed that God directed me to her organization via the web and the help that saved our 2 1/2 year old grandsons that are so smart.

1 Andy13

Client Served

Rating: 5

Whenever you get devastating news from your doctor a lot of the information they give you afterwards kind of goes right over your head as you wonder why/how this is happeing to us. We found out about TTTS at 21 weeks and the doctors were preparing us that we may lose one or both of our babies. We obviously wanted to do anything and everything for our babies. The TTTS foundation website helped us get more information on exactly what was going on and gave us great support. It also helped relay to friends and family exactly what we were giong through as we couldn't explain everything.

5 Shawn8

Client Served

Rating: 5

I just want to thank everyone at the foundation for sharing their experiences ...helping us educate ourselves ...and paying for our sons and our family. Shawn and Kathleen Mauck. Baltimore Maryland

3

Client Served

Rating: 5

The TTTS Foundation has help countless families and in so many ways by the experience and research that has been done non stop for well over 20+ years now. Any less experience would NOT have been able to save our babies lives and I am forever greatful and supportive of everything that this foundation has done and continues to do despite the slander that others put forth to hurt people in such shameful ways. I was told of laws and rights my child had that hospitals had to provide to her that they were not providing as fast and as we needed them to. I was told of methods that improved my daughters condition that are not told to most moms by their doctors, I was told of so many empowering ways that helped our fight against TTTS and without having this type of experience from a founder who was there to advocate for BOTH of our babies, our outcome would have been very different. This Foundation Does NOT just pass on to you what some doctor may say to have your business sent to their Fetal Center or Dr. Office. ..THIS IS THE ONE PLACE that will call your doctor for you and tell them they are not giving you the best or sometimes even the correct advice at all for your specific case. The TTTS Foundation Advocates for your babies to LIVE no matter who your doctors are and this determination and love for our babies to have the best chance possible to fight and make it , is what saved their life. I have never known any organization to be as this foundation is. I am very thankful this Foundation doesnt allow just anyone to be a part and say whatever advice they want to people. My granddaughters would not be here today if I had taken advice I have seen in other places since our ttts case has ended. I thank God for the work He has done thru this Place and I thank the founder for having the kind of heart Gods hands can do His work thru. We are forever greatful.

4

Client Served

Rating: 5

My wife and I lost our twins. The kindness of those at the foundation got us through some hard times. God bless the work they do. It was nice to feel not alone.

4

Client Served

Rating: 5

My boys were diagnosed with TTTS in April 2011. I was sent to Cincinnati for laser surgery to save their lives. I found the TTTS foundation through a google search and found the website very informative. I reached out to the foundation through the Facebook page where I found more support. The founder have dedicated her life to helping other people going through the same kind of pregnant she went through. I attended a conference in Cleveland Ohio in July 2012 and it was very inspiring to meet other people who had walked the same journey as me and who's lives had been touched by the foundation. I am still very involved with the foundation and I will always do what I can to help the foundation spread awareness and help other families. There are many babies who are alive today because of the help and information provided by the TTTS Foundation.

4

Client Served

Rating: 5

Unfortunately, TTTS takes lives. There is no foundation that can save every baby, not even one that has the steller, long-time record of the Twin to Twin Transfusion Foundation. Please understand that when babies are lost, there is bitterness. There must be a target. Unfortunately, we are seeing that in some of these reviews. They are unfair and not based in reality. The TTTS Foundation has a long-standing record of fiscal responsibility. There has never been any wrongdoing, and any hints to this are completely off base. My family was helped in a huge way by this foundation, and it made a difference. Without it, we would not have added twins to our family.