By Katie Devlin

On the day after Thanksgiving in 2018, Shirley Wickman, founder of the non-profit Heart for Life, received the call that changed the pulse of her family’s life. “I think we have a heart for your son, the nurse said calmly. 

Shirley’s son, Rexford, had suffered a cardiac arrest three months prior and was diagnosed with restrictive cardiomyopathy — a rare heart condition where the chambers of your heart become stiff and thicken overtime. Rexford was given the gift of life and Shirley began her journey into advocacy, research, community — and, ultimately, purpose. 

“After my family was affected by heart disease, I noticed as I was going through this journey that there wasn’t a lot of support and research on having a long-term solution for heart transplantation,” Shirley explained. Rexford’s longevity and quality of life would probably mean two or three transplants due to rejection. “It’s not that these hearts aren’t working well, it’s because they’ve been through a lot. Rejection in the long-term is what causes the heart to fail.”

FINDING FOCUS 

Shirley’s early research led her to the American Heart Association, where she discovered that most of the published research is focused on preventing heart transplants. Little research has been done to understand post-heart transplant rejection. “I really wanted to hone in on what specifically could change the course of their treatment. That’s when I decided I needed to go out on my own, I needed to make a difference. I needed to educate people.”    

Shifting her focus locally in Michigan, Shirley began to advocate for the prevention of heart transplant rejection with University of Michigan C.S. Mott Children’s Hospital. Shirley teamed up with Mott’s to promote research into the causes of transplant coronary artery diseases (TCAD). Some of the research currently underway includes exploration of the coronary arteries and finding medications that could possibly prevent long-term organ rejection. 

BUILDING A COMMUNITY 

The community that Shirley has built was paved on personal connections to Rexford’s recovery. Rexford, known at Mott’s as a superhero for his bravery, wants to be a heart surgeon when he grows up. “What better way to go through the difficulty of having a heart transplant than to have a doctor who’s been through that?” she said. 

Starting in Michigan, with a long-term goal for international support, Heart for Life’s community extends beyond post-transplant support. “We also have a lot of support for heart families who are not at transplant, but are in a situation where they have a heart disease that will most likely lead to heart transplantation.” Extending even further, Shirley noted, “Heart for life could help anyone who gets any organ transplant. We’re all a community, no matter where you are.” 

COMING FROM THE HEART  

Like many not-for-profit founders, the drive to start Heart for Life transformed from a personal reason to making a real difference. “In 2023, what we want to do next is go into Phase 2 and start testing. We have about 40 kids right now who are going to be asked to be in our clinical study.” For Shirley, the combination of this research and other heart research projects that are focused on transplantation can increase organ longevity and help give a better quality of life for heart transplant recipients. 

To get involved, visit heartforlife.org and sign up for the Heart for Life 5k and One-Mile Fun Run on Sep 25th at Travis Pointe Country Club. All proceeds support pediatric heart transplant research. The event features a local business showcase, a chance to participate in a raffle for donated items, and local gourmet food trucks. Participants who register before August 15th are guaranteed a race shirt. 

Bio:

Katie Devlin is an Ann Arbor native, a University of Michigan alumna, and has over 17 years of experience in marketing with a passion for healthcare. As the Healthcare Go-To Market Manager for Plante Moran, Katie understands the needs of patients, providers, and payers across the continuum of care and helps shape the future of healthcare in the United States.