2 people found this review helpful
Twin to Twin Transfusion Syndrome Foundation, Inc.
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December 9, 2012
2 people found this review helpful
I think the TTTS Foundation is a wonderful organization - Mary made me feel so much better about my situation during an exceptionally hard time. I needed to be put in contact with Doctors who gave me medical information and advice.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2011
4 people found this review helpful
December 9, 2012
4 people found this review helpful
My wife was told the pregnancy was at risk for TTTS early in the pregnancy. We were terrified. We looked up a lot of information online and found no solice. Until a friend put us in contact with the TTTS Foundation. We had replies from the foundation and supporting Dr's within minutes of our messaged. phone calls/ emails/ messages. They were quick at reply and gave us valueable information that we used and changed what we were doing to ensure that we were doing all we could to increase survival rates. I am not one to get involved with these type of posts because I feel they are typically done to hurt not help. But this one I could not leave unspoken. The TTTS Foundaiton is an amazing organization that does all they can to help and educate and they will always recieve my highest praise for all they do.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2011
4 people found this review helpful
December 9, 2012
4 people found this review helpful
The TTTS Foundation played a large role in saving my babies lives. When I was put in contact with them I knew NOTHING about TTTS other then the deadly statistics. The TTTS Foundation put me in contact with individuals and Dr's who were there to support and gave me GREAT advice and information on what to look for and do to better increase the chacnes that my babies would live. I full support the TTTS Foundation and all they do for families. They serve TTTS families as well as spread awareness at every turn. They send out COUNTLESS books/ and information to Dr's offices and individuals to educate on TTTS. I would in a heartbeat recommend anyone facing TTTS contact the TTTS Foundation if they want someone to help them and be their advocate and give them appropriate / necessary information!
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
5 people found this review helpful
December 9, 2012
5 people found this review helpful
In 1996, my twins were diagnosed with Twin to Twin Transfusion Syndrome. Thankfully, my doctor gave me the phone number of the TTTS Foundation. With the founder's help, I was able to travel out of state via airplane, my husband stayed in a reduced-rate hotel for a week, and best of all.....both of my twins survived and are now healthy, happy 16 year olds. This is unfortunately not always the case. TTTS is a disease that never presents the same way from pregnancy to pregnancy, and it moves quickly. The founder of this organization uses funds to assist patients in many different ways. She is kind and knowledgable and is quick to respond to a parent in need. I would not hesitate to support this organization in any way.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
4 people found this review helpful
December 9, 2012
4 people found this review helpful
This organization does spread awareness. It provides information and support down to an individual level about TTTS. It helped our family through early detection, and provided support through the last and toughest part of our pregnancy. They gave us the material to advocate for ourselves and inform ourselves. I have unfortunately noticed other pretentious organizations/individuals slandering through various social media venues which is a shame, as this group has formed numerous bonds with families, Doctors and Hospitals. The awareness conference was a great bonding experience for families to gather together for a single purpose and was an awareness weekend. The Foundation has been in existence for 23 years and does not receive funding for all fetal syndromes, only TTTS.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
1 person found this review helpful
December 9, 2012
1 person found this review helpful
This foundation could be so great. The woman running it has truly great intentions. But in 23 years, she has tried to do it all. Many people want to help and volunteer, and she turns them down. Unless they give a hefty sum. They only give back to the families $0.03 for every dollar donated. She has not brought awareness to TTTS. Many doctors still don't even know what it is or what to look for. Find a support group on facebook to give money to the families directly. Please don't feed this middle man.
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How would you describe the help you got from this organization?
None
How likely are you to recommend this organization to a friend?
No
How do you feel you were treated by this organization?
Badly
When was your last experience with this nonprofit?
2012
September 1, 2012
Does not spend enough on ttts families and research. Took in $90k and spent $3k on families while $50k was paid out in salary.
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Will you volunteer or donate to this organization?
No
How much of an impact do you think this organization has?
A little
When was your last experience with this nonprofit?
2010
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