Where on earth do you begin when it comes to advocating for long term care for TAPS? It’s a long, tedious road at times, and sometimes even exhausting. Advocating for TAPS starts with some basics, and Stephanie shared her tips on how to get things moving.Continue reading “Navigating Appointments: Tips For Advocating For TAPS Followups.”
As you know, research into Twin Anemia Polycythemia Sequence (TAPS) is an evolving part of science and the medical world. For a disease described only 15 years ago, we know more about it than ever, including things like the long term effects and international trials are working on finding the best treatment for it. Of course, as we understand more about TAPS, the diagnosis and treatments become more refined. So let’s look at the new staging system for TAPS, and talk a little about why it’s here, and also a little about the history of it.Continue reading “The New TAPS Staging System”
The team here admit to one thing – we’re so passionate about getting MCA dopplers done that we push and push and push information at you, and tell you you MUST get them done. We give you the tools to advocate and help you with wording and help bust those myths about TAPS screening. And then, all of a sudden, you get one bad MCA doppler, and everything seems so dramatic.Continue reading “One bad MCA doppler means…”
TAPS causes so much frustration. This blog is about living with this fact.
I’ve talked about our story so many times, and I’m pretty sure most of you can recite it by heart. Born at 31 weeks with Twin Anemia Polycythemia Sequence (TAPS) in 2013, one of the best ways to raise awareness is to talk about our story on repeat. It’s guaranteed you’ll either get annoyed by me or want to join my campaign ;).Continue reading “TAPS And Frustration: It’s A Real Struggle”
I had the privilege of being invited to the promotion and Ph.D. Defense of up-and-coming TAPS researcher, Dr. Lisanne Tollenaar this month. Here’s how the day shaped up.
One of the more interesting parts about the TAPS Support Foundation is that we get to see the other side of not only research, but we get to talk to emerging researchers and also learn the latest news on what has been discovered about TAPS. Even though it was discovered 15 years ago, and we know more than ever about it, there is still so much that we don’t know, and we continue to learn more.Continue reading “Congratulations Dr. Tollenaar: A New Era Of TAPS Research”