The team was formed in 2011 with a number of TTTS parents who got together online sharing the desire to do something to help other families who had lost children to Twin to Twin Transfusion Syndrome. The TTTS Support Team was created and the foundation of the Team, the grief care package idea, was born.
The group started sending out packages in 2012 and has sent out almost 1000 packages world wide since then. In March 2016 we received our 501(c)3 status, becoming a recognized federal non-profit in the United States.
Sadly, due to dwindling volunteer numbers, coronavirus, and personal reasons, the non-profit arm of the team closed officially in 2021.
However, we have grown our connections and built our community with other charities and parent groups to extend our support. We wanted to continue to expand awareness of all things TTTS using our social media platforms, and website, and have partnered with TAPS Support who generously volunteered to host our website and help us raise awareness.
As we continue to grow and transition as an organization, who knows what the future holds. For now, we will continue to go on as we began – raising awareness of TTTS, helping families understand their diagnosis, and provide factual, evidence based information for families who need it.
And we will continue to work with researchers, doctors, and other professionals, as well as charities who are wanting help us on our mission!
If you’d like more information on the TTTS Support Team, on TAPS Support, or would like to volunteer with us – please email email@example.com
How the TTTS Support Team Started
The TTTS Support Team was founded by Christina Russo and Piperlyne Tomczyk. Both women experienced pregnancies complicated by Twin-Twin Transfusion Syndrome (TTTS), and both lost one of their sons due to complications from their diagnosis.
Christina Russo, Mom to Chase and Tyler & Co-Founder of the TTTS Support Team
Piperlyne Tomczyk, Mom to Nolan and Eli & Co-Founder of the TTTS Support Team
Christina’s son Tyler passed in utero after laser surgery, and Piplerlyne’s son Eli passed from necrotizing enterocolitis (NEC), after his premature birth due to post-laser TAPS – a result of TTTS laser surgery.
Their survivors, Chase and Nolan also have many complications, and both Christina and Piperlyne advocate with their whole hearts for TTTS awareness, and also the need for followups and care for survivors. This starts with being a voice for their incredible boys and their needs.
While TTTS related communities existed, loss parents often felt isolated or shamed because they weren’t the success stories. There was little support offered, and many felt like they were just treated as a statistic.
Piperlyne and Christina, together with some trusted friends created a community where these parents were supported and their losses acknowledged. They began sending care packages to these families, along with personal support and dedicated facebook communities.
Their deep understanding of the grief felt by families, along with their determination saw the TTTS Support Team being registered as a non-profit organization, with hundreds of care packages distributed by volunteers over several years.
TTTS advocacy was a huge part of their mission, and they helped many families also understand their diagnosis, sharing their own experiences and their ongoing advocacy for their sons and their needs to help other families in a similar situation.
They also began a NICU support group for parents, and still are active members of the twin community, sharing their experience and advice with families receiving a diagnosis. While the TTTS Support Team now exists as a branch of TAPS Support , they provided the inspiration for this new charity, and offered advice, assistance, and friendship to Stephanie as she established this sister organization, and still offer advice and support to this day.
We are incredibly grateful to both these strong, proud advocates for the groundwork they have laid for us, and we pledge to continue their incredible work. The TTTS community would not be where it is without them.