What if we could combine researchers, patients, academics, and care providers in one place, and create a patient network, as well as support research? Meet the TAPS Support Foundation, where we’ve done exactly that.
We’re a team dedicated to raising the profile of Twin Anemia Polycythemia Sequence, through helping fund research and raising awareness of this disease, as well as breaking down the walls between patients and doctors. For all of us, it’s about making a positive change and creating a safe place to ask questions, and to get the right information, fast.
Our unique collaboration means that we have access to experts and experience, as well as an amazing support network ensuring noone is ever alone or confused in their diagnosis.
Making A Change
So now you know we’re here, and what we want to do – it’s time to introduce the people behind the foundation and why they think this foundation is important.
We’re excited to introduce you to our team! We’re all dedicated to making a difference in the world of TAPS – and here’s what some of our team had to say about starting the Foundation.
Meet The Team
“Creating this foundation has been a long labor of research, but also love. Remembering back in 2013 when we received our diagnosis, and how scared and alone we felt, it was important to me that noone should ever feel like this again.
Research saved the lives of my girls, and everyone should be entitled to the same standard of care that I received. The TAPS Support Foundation means that I can now bring the research and the amazing team that saved my girls to the world, and also help support further research. ”
Stephanie Ernst – Founder.
“TAPS is a rare disease and was only discovered 15 years ago. We have gained so much knowledge since then, but there is still much to learn and room for improvement and optimization of the management and outcome. I am delighted with the TAPS Support foundation as it is a crucial step to help parents in need and support our medical and research efforts towards the best possible treatment for babies with TAPS.”
Prof. Dr. Enrico Lopriore, Patron
“I’m happy to be involved with the TAPS Support Foundation because it’s the only Foundation of its kind – dedicated explicitly to improving TAPS outcomes for families around the world. The TAPS Support Foundation has the unprecedented potential to impact research by bringing together a diverse group of stakeholders dedicated to improving TAPS outcomes. Physicians, Research Scientists, Academics, Nurses, Parents, and more are pooling together their unique perspectives and abilities to produce high-quality research capable of influencing significant change.” Dr Lauren Nicholas, Ethics and Advocacy Advisor
“I think the Foundation is vital because it builds a bridge between the doctors and the families. TAPS is a rare disease, and the odds of meeting another TAPS family are low. You connect these families and experiences and help provide people with the right information. Medical therapy is important, but having someone to talk to that has gone through the same experience can be healing as well (especially for parents), and that is something that we as doctors can not give. That’s why it’s so important to have a good support network available.”
Lisanne Tollenaar, Research Advisor
When meeting Stephanie Ernst and her lovely twin girls for the first time in 2016, I became aware of a condition called TAPS. Despite long years of studying in the nursing field, I had never heard of it before. Stephanie’s enthusiasm for her advocacy work is quite contagious, and I am proud to be part of the Foundation it culminated in! To me, advocacy work, helping to improve a better up-to-date patient-centered communication, and supporting active researchers in the field means having a direct impact on health outcomes and saving lives of unborn twins. Katie Schmitt-Weese – Treasurer
Ready To Join Our Mission?
We’re excited to start changing the future of TAPS research and helping more families connect through this diagnosis. Want to join in? Find our Facebook Group here, or follow our social media channels. Or just get in touch here!