Beacon of Hope

By Anna Robertson Ham

The Brett Boyer Foundation is a passion project that emerged from a family’s grief and desire to make a positive impact, after the loss of a beloved daughter. Ellen and Bo Boyer alongside Bo’s sister and brother- in-law, Caroline and Luke Bryan, foundedThe Brett Boyer Foundation in February 2017, after Ellen and Bo lost their daughter, Brett, to congenital heart disease (CHD). The foundation aims to fund research for CHD, support families during their hospital stays, and celebrate the joys of life with Down syndrome.

With a mission to raise awareness and provide assistance, the foundation has become a beacon of hope for families and individuals affected by CHD. “We had all this love we didn’t know what to do with. I told Bo, Caroline and Luke, if I don’t find something positive to do with this love, I won’t survive this grief,” explains Ellen. “We all decided to band together to fund the research that could have saved Brett’s life, support families while inpatient, and to celebrate Brett’s Down syndrome diagnosis. Being a part of the Down syndrome community has been the biggest blessing of our life. Down syndrome doesn’t need a cure, CHD does.”

Congenital Heart Disease is a common condition affecting one in every 100 babies, making it more prevalent than all forms of childhood cancer combined. Despite its frequency, CHD receives significantly less research funding. The Brett Boyer Foundation seeks to address this imbalance by raising awareness about the condition and the urgent need for research advancements. The foundation’s primary focus is on funding research for CHD rather than pediatric cancer. “We don’t fund pediatric cancer research. We fund congenital heart disease research,” Ellen says. “We’ve worked really hard to create a community of online support for the CHD community, to let them know that we are here funding research hoping for a brighter future in the world of CHD.”

The foundation collaborates closely with the pediatric cardiac team at Monroe Carell Jr. Children’s Hospital at Vanderbilt, providing vital assistance to inpatient families to help lighten their load while experiencing long stays in the hospital. “We have had golf tournaments, Bike for Brett at Cyclebar, and our annual Redbird Games that Caroline and Luke host to help us fundraise. We also sell merchandise inspired by Brett on our website that help us fund our mission,” she says.

Initially centered around the Children’s Hospital, since that is where Brett was treated, the foundation’s family support program has expanded its reach across the country. The foundation collaborates with cardiac social workers to assist families with various needs, including financial support for bills, mortgages, car payments and self-care. The foundation’s ultimate goal is to alleviate the burden faced by families during their children’s long hospital stays. “We’ve now grown and help support families, not just at Vanderbilt but around the country, from Atlanta to Boston and in between,” Ellen says.

Another part of Brett’s story is Brett’s Barn, an endearing project initiated by Brett’s aunt, Caroline. Brett’s Barn holds a special place in the foundation’s endeavors. “When she was born, Brett’s Aunt Caroline promised she would buy her a white pony,” Ellen explains. “She kept her promise and bought a white pony named Kilo and decided to name the barn after Brett.” The privately funded sanctuary now houses over twenty animals that bring joy and happiness to those who visit. The foundation aspires to open Brett’s Barn to the public, enabling more people to experience the love and delight these animals bring.

The Brett Boyer Foundation envisions expanding its impact by working with numerous hospitals to provide family support and fund research across the country. With their rapid growth and achievements thus far, the difference is planning for sustained success long-term.

"We had all this love we didn’t know what to do with. I told Bo, Caroline and Luke, if I don’t find something positive to do with this love, I won’t survive this grief."

The foundation continually strives to raise awareness and spread knowledge about CHD to ensure a brighter future for affected individuals and their families. Individuals and businesses can support the foundation by following their social media accounts, spreading the word about their work, attending events or becoming sponsors. Donations made through the foundation’s website play a significant role in advancing their mission. Educating the public about CHD remains a significant challenge, as many people are unaware of its prevalence and the need for research funding.

The Brett Boyer Foundation stands as a testament to the power of love and hope in the face of adversity. Through their commitment to CHD research, family support, and the joy found in Brett’s Barn, the foundation has brought light into the lives of countless individuals. With ongoing efforts and support from the community, they strive to create a future where CHD is better understood and no longer poses a threat to the lives of innocent children. “We are forever grateful to be able to do this in Brett’s honor. We encourage inpatient families to reach out to their social workers to connect us for support,” Ellen says.