Welcome to the TTTS Support Team
We support families who have received a diagnosis of Twin to Twin Transfusion Syndrome by creating connection, community, and awareness.
When we started the TTTS Support Team we started as a group of parents who wanted to offer support to the grieving parents of our community. Grief support is our foundation. We began by creating and offering free grief care packages. This program continues to be one of the core programs of the Team. We send packages to families world wide. There is no time limit to when a family can request a grief package, because there is no time limit to the grief families experience.
Two other foundational programs created by the Team include; Mother's Day and December Holiday card mailings to the mothers and families who have received our packages in the past.
Our newer programs include an awareness raising blog of TTTS stories as told by the families, a partnership with some of the top maternal fetal medicine surgeons in the United States, and new partnerships with other TTTS parent groups that focus on up to date medical information and parent advocate resources.
Look to 2020 to include another very exciting awareness project on our social media and more specialized support for another specific group of the TTTS community.
If you are interested in becoming a volunteer member of the Team please email us at TTTSSupportTeam@aol.com or message us on Facebook.
Christina and Piperlyne
Current Projects and Fundraisers
Rare Disease Day, February 29, 2020
We are so excited and honored to be a partner with Rare Disease Day and help raise awareness for TTTS, TAPS, and TRAP along with all the other rare diseases in the world.
There has been a lot of discussion among TTTS families on whether or not TTTS is rare. So what makes a disease rare and why is TTTS included? According to Rare Disease Day, "A disease is defined as rare in Europe when it affects fewer than 1 in 2,000."
So while 1 in 7 Identical multiples are affected by TTTS and/or TAPS, that number falls when they are included in all multiples pregnancies and it falls even further when included in all pregnancies. When compared to all pregnancies, TTTS pregnancies are rare.
According to Rare Disease Day, the common challenges for all rare diseases include:
"The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also the need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients."
When it comes to diagnosing and treating TTTS and TAPS, we know this to be true.
Please follow our Facebook page and Instagram account for ways you can participate, support Rare Disease Day, and raise awareness for TTTS, TAPS, TRAP and all other rare diseases.
The Audrey & McKenna Foundation
In November we had the opportunity to talk with Audrey and McKenna's parents as they faced the unthinkable, the death of their twin girls.
Within days of the loss of their twins, they began The Audrey and McKenna Foundation to help other families facing the same devastating loss.
We are so very honored to share the work they are doing and support their mission of providing a 100% free, handmade cremation box from someone who has been where you are.
To request a cremation box for your child(ren) please contact them directly here.
Click here to follow them on Facebook.
If you would like to request a grief package from the Support Team, please click here.