Innovation and Shared Decision-Making
Ethan M. Lindberg Foundation believes that the way doctors and parents communicate is critical, especially when discussing complex decisions about care that is innovative.
It’s our mission to empower families and doctors to work together to create a care plans and strategies that are tailored to each child’s need. Encouraging communication that defines goals and spells out options and possible outcomes is a gift to the families and medical team, regardless of outcome.
We are passionate about helping parents make the best decisions possible for their child's care. We believe this is possible when parents have the research, data and information they need to do so. This comes through more research, improving way parents and doctors communicate and through transparency. We are committed to funding initiatives that do all three.
Improved Care through Research
When treating complex congenital heart defects, there is often not one clear path.
We believe it is important for families to have as much information as possible so that they can make the most informed decisions. Especially about care that is innovative.
- In 2015 and 2016 we funded retrospective research to look at candidacy for Bi-Ventricular Repair. See the abstract here. Feel free to email us for the full article.
- In 2017 we committed to join forces with Mesoblast, Boston Children's Hospital and other foundations to fund research using stem cells to improve diastolic dysfunction. In 2018, the first patient was enrolled in the study.
At this time, the foundation funds research to improve care and decision making for single ventricle congenital heart disease.