Patient Worthy would like to wish a Happy 2nd Birthday to one of our partners, the TAPS Support Foundation. It is hard to believe that it has only been two years since TAPS Support launched on August 18th, 2020. So much has happened since then, and today, the TAPS Support Foundation is excited to celebrate its 2nd birthday.
To help celebrate, and to wish TAPS Support the best in continuing its efforts in the future, we are excited to share some of the advances that TAPS Support has made over the past two years.
The TAPS Support Foundation website explains that it is:
a registered charity dedicated to changing the way monochorionic twin pregnancies are diagnosed, handled, and treated, as well as raising the profile of Twin Anemia Polycythemia Sequence (TAPS). We raise funds for research and help families diagnosed with TAPS advocate for care before, during, and after pregnancy.
When Stephanie Ernst found out that she was having twins, she was initially shocked. But after her twins were diagnosed with twin-to-twin transfusion syndrome (TTTS), and then later began to develop TAPS, Stephanie decided to use her voice to raise awareness of the complexities of TAPS. While TTTS stabilized, the TAPS did not; Stephanie’s twins, Emilie and Mathilde, were delivered at 31 weeks via emergency C-section with stage 3 TAPS.
Stephanie’s experience led her to launch the TAPS Support Foundation to raise awareness, spur research, and assist other families. You can read more about her story, and the Foundation overall, in our interview from June 2021.
Over the past two years, TAPS Support has helped to expand the understanding of what twin anemia polycythemia sequence (TAPS) is. In discussing how she felt about finally reaching the two-year mark, Stephanie shared:
“I don’t think that when I started the foundation it would have been received the way it was. It’s been an incredible ride for us, with a lot of recognition.”
- Twin Talks webinars. The TAPS Foundation, alongside the Fetal Therapy team from the Leiden University Medical Center (LUMC), has offered the Twin Talks webinar series built around frequently asked questions presented to the TAPS Support Foundation. Stephanie explains that the webinars give families direct access to the experts – and she loves that the Foundation is able to support families in this way.
- Interested in checking out the webinars? Take a look at TAPS 101 and Long-Term Effects of TAPS.
- ORPHACode. The TAPS Support Foundation was able to get an ORPHAcode for TAPS, finally breaking some myths and signifying TAPS as distinct from TTTS.
- Listing on NORD. TAPS is now listed as a rare condition by the National Organization for Rare Disorders (NORD).
- The Twin Run. In 2021, Mart Smit ran 150 kilometers over 3 days to raise €11,000 for twin research, even helping to fund research into TAPS through LUMC. Paper results from this first study have even recently been published! The second annual Twin Run was held on May 14, 2022. Stephanie describes the event as “an incredible exhilarating time that really bonded us.”
- Poster Presentation at ECRD 2022. During this poster presentation, the TAPS Support Foundation highlighted the importance of patient organizations having a close relationship and bond with researchers to benefit each other.
- Presenting a photo of the TAPS twins to the LUMC. The TAPS Support Foundation presented this photo as a birthday gift; one of the Foundation’s favorite annual events is gifting things for its birthday.
To learn more about the TAPS Support Foundation and its endeavors, head here.
We wish the Foundation a very happy 2nd birthday and look forward to seeing how you will continue to grow in the future!