Welcome to Ethan M. Lindberg Foundation's page for the 2018 Boston Marathon!
We are honored to name our Marathon Team TEAM FRANNIE in memory of Frannie O'Brien who lost her battle to Hypoplastic Left Heart Syndrome shortly after birth in 2016. Frannie, and the many children we know and love, inspire us to run #HEARTSTRONG and make a difference. Our team is made up of amazing runners who each have a direct connection to children born with congenital heart disease (CHD). Each of them is running to honor their stories and to raise collective awareness about CHD and the impact it has on families.
Congenital heart disease is the #1 birth defect in the United States and the world. Each year approximately 40,000 children are born with a heart defect. Twenty five percent of these children need life saving surgery in the first year of life.
Congenital heart disease is a life-long, family affair. Families often spend long periods of time in the hospital, they miss work and have to manage their home and other children while they are present to their sick child. When they leave the hospital there are medicines, doctor appointements and often their child faces developmental delays requiring targeted care. These experiences create mental and emotional challenges for the patient and family.
The Ethan Lindberg Foundation exists to fill in the gaps that families experience on this journey. Through practical support, reserach and joy we are changing the way we care for these families. We are proud to serve Heart Families in the following ways:
-Lease two apartments to provide long-term housing for families traveling to Boston Children's Hospital for cardiac care.
-Provide direct financial grants to families to offset the cost of travel and long-term hospital stays.
-Fund reserach focused on a treatment for diastolic dysfunction using stem cells.
-Fund research and programs to help doctors and parents make the best possible decisions together.
-Fund Music Therapy for children inpatient on the cardiac floor at Boston Children's Hospital.
-Created and host Restoring a Mother's Heart, a retreat for bereaved mothers whose childre have died from chronic illness.
Thank you for partnering with us! Let's make a differnce together!