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The Foundation


The Ethan M. Lindberg Foundation advocates for unique and collaborative approaches to medical and patient care that make a difference for children and families facing congenital heart disease.

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The Foundation


The Ethan M. Lindberg Foundation advocates for unique and collaborative approaches to medical and patient care that make a difference for children and families facing congenital heart disease.

About The Foundation

Having a child with congenital heart disease (CHD) is a life changing experience. This significant experience matters. Sharing hard earned wisdom gives meaning to the journey. The Ethan M. Lindberg Foundation is about families helping families. It’s about working together to lighten the load for each other. It’s about sharing our experiences and helping families that come after us walk a clearer and straighter path. 

 

Practical Family Support

We know that having a sick child is a family affair. Ethan M. Lindberg Foundation helps families be families as they face CHD. We offer grants to families  and provide long-term housing solutions for families with lengthy hospital stays. 

Innovation and Shared Decision-Making

Ethan M. Lindberg Foundation supports exceptional, patient-focused care initiatives for children with CHD. We stand behind initiatives that empower families, improve family/physician communication, improve outcomes, and focus on quality
of life goals for children with complex heart disease.

 

Joy Through Music

Participating in Music Therapy can reduce anxiety and pain. It can provide an emotional outlet and a break from the illness at hand. Ethan M. Lindberg Foundation funds Music Therapy Programs that have a focus on children with CHD. 
 


I would like to thank the Ethan M. Lindberg Foundation for advocating for the needs of our cardiac families and for offering them tremendous support
— James E. Lock MD, Cardiologist-in-Chief, Boston Children’s Hospital
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Practical Family Support


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Practical Family Support


Practical Family Support

As parents we’ll do anything to access the best medical care for our children. This very often involves packing a bag, leaving our home, family, and job to travel to centers that provide the highest quality care. When in comes to treating complex congenital heart defects, Boston Children’s Hospital is one of those centers.

Traveling to access care for a sick child is a family affair. Families not only worry about their child, but also about medical bills, the cost of travel and meals, where they will stay, and how they will care for their other children while being present to their hospitalized child. They worry about maintaining their job, their home, and their financial future.

Family Grants

Ethan M. Lindberg Foundation offers grants to families traveling to Boston Children’s Hospital for Cardiac Care. We focus on families who have frequent and lengthy hospitalizations. Click here to learn more and to apply.

Long Term Housing

Families need practical support to access care for their children. And while they have a child in the hospital, they also need a place to stay. A place that is tailored to the needs of a family amidst stress, while trying to manage their life which often includes work and other children.

Families need a home away from home.

Ethan M. Lindberg Foundation is working to provide long-term housing for families that are patients of Boston Children’s Heart Center. For up to date information on this project visit our Facebook Page or email Jessica Lindberg

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Innovation and Shared Decision-Making


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Innovation and Shared Decision-Making


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.  

Improved Communication

We are working with the Bi-Ventricular Team at Boston Children’s to craft family and medical team education that encourages shared decision-making between families and doctors. We are also developing tools that doctors can use as they speak to families about innovative treatment options.

Innovative Patient Care

When treating complex congenital heart defects, there is often not one clear path.

We are working with the Bi-Ventricular Team at Boston Children’s to develop an industry leading and comprehensive patient care initiative to improve outcomes and the patient, family and provider experience. This includes data aggregation and predictive analysis to guide decisions about complex care.

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JOY through Music


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JOY through Music


Joy Through Music

“ONE GOOD THING ABOUT MUSIC, WHEN IT HITS YOU, YOU FEEL NO PAIN” – BOB MARLEY

Ethan was a born music lover. When he was in the hospital, his happiest moments were playing music and singing with his music therapist. There’s plenty of research that shows that music brings joy and healing, reduces anxiety, heart rate, and blood pressure and shifts the focus from the illness at hand.

 

Music Therapy in Pediatric Care

Watching Ethan experience joy amidst some of his hardest days was a gift. We requested frequent music therapy for Ethan, but unfortunately, since it’s funded entirely by philanthropy, there was not enough available for him to experience this joy more than once per week. The Ethan M. Lindberg Foundation is out to change that. We are supporting the expansion of the Music Therapy Program at Boston Children’s Hospital. With our help, more heart patients will experience the power of music therapy.

 
 
 

The joy of music is transformational. Will you join us in bringing smiles to faces and joy to children with special hearts?

 

 

Ethan and Jack Johnson

Ethan loved Jack Johnson's music and got to FaceTime with him from Boston Children's Hospital in December of 2011.