Inspired by the life of Ethan M. Lindberg, first-born son of Jessica and Erik Lindberg, the Ethan M. Lindberg Foundation works for collaborative approaches to medical and patient care that impact children with congenital heart disease (CHD) and their families. The foundation is about families helping families as they face CHD. It’s about working together to lighten the load for each other and sharing experiences.
The foundation’s mission is to empower families and doctors to work together in creating 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 helpful to families and the medical team, regardless of the outcome.
The foundation believes that families make the most informed decisions for their child when they 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. To this end, initiatives of the foundation have included:
- In 2015 and 2016 the foundation funded retrospective research to look at candidacy for Bi-Ventricular Repair.
- In 2017 the foundation joined forces with Mesoblast, Boston Children’s and other foundations to fund research using stem cells to improve diastolic dysfunction. In 2018, the first patient was enrolled in the study.
- The foundation also funds research to improve care and decision making for single ventricle congenital heart disease.
Keenly aware of the financial burdens encountered by families of children with CHD, the Foundation offers practical family support by offering grants for temporary housing and providing long-term housing solutions for families with lengthy hospital stays.
Another focus of the foundation is on the quality of life for children with complex heart disease. One way that they accomplish this is by funding music therapy programs for children with congenital heart defects to reduce their anxiety and pain and provide them with an emotional outlet. The foundation seeks to bring smiles to faces and joy to children with special hearts through the transformational joy and power of music therapy.
For more information go to: www.ethanlindberg.org