From One Child’s Dark Days with Severe Eczema to a Worldwide Movement

When Korey Capozza’s son was born in 2008, he was healthy in every way. But nine months later, he began to develop a rash that got progressively worse. By the time he was two, it covered his body from head to toe. He couldn’t sleep. He couldn’t play or go to daycare. He was so itchy that he would scratch until his skin bled.

“The nights were long and the days an agony,” Capozza said. “We struggled to get the eczema under control with the treatments he was getting from his doctor.” They bounced from specialist to specialist, desperately looking for solutions, until finally they went out-of-state to a hospital with a specialized program for severe eczema. 

This journey is typical of those who experience severe eczema. Unlike the more mild form of the disorder, it’s hard to control, involves the entire immune system, and can destroy a child’s quality of life.

Once her son found relief, Capozza, who holds a Master’s in Public Health from the University of California, Berkeley, created a nonprofit, called Global Parents for Eczema Research (GPER), to help other families like hers. GPER navigates the maze of diagnoses and treatment, and advocates for research and policy changes to advance evidence-based care approaches.

Since its launch in 2015, GPER has grown in scope and members, but it remains a grassroots organization with just seven people working to support families besieged by severe eczema. Their Support for Eczema Caregivers (SEC) program is a “lifeline” for parents. Parent coaches work with other families in small groups to help them deal with the often overwhelming skin care routines and cope with the grief and anxiety that can come up. 

The program now reaches over 2,000 families worldwide. GPER also offers a free app for the program and a web-based hub for caregivers featuring a set of holistic resources, from meditations to tools related to cognitive behavioral therapy and stress reduction. 

Their annual Big Ideas Contest invites patients and caregivers to submit their ideas for research with the chance to earn monetary prizes and potential research partnerships or funding for their ideas. The driving notion behind the program is that families have insights that could lead to better treatments or a cure but their knowledge is currently ignored.

Because making sense of therapy and treatment options is increasingly confusing for parents, GPER guides parents through treatment decisions with its online navigator developed using clinical trial data and is presented in a parent-friendly format. “Most parents don’t have the background – or the time – to read dense, scientific articles about eczema treatments. 

“Our podcast and navigator programs do the heavy lifting for them by breaking down the research in an easy-to-understand way,” says Capozza.

Capozza’s son is now 15 and thriving. With more treatments available for children, GPER is now focusing its research grants program on finding a cure for eczema and investing in science that will uncover the causes of the condition.

“We have to find answers because millions of children still suffer from eczema – and more babies are born with it every day,” says Capozza. “My son was the inspiration to start GPER back in 2015, but now, it’s really about the other families,” she says. “So many of them are still in the thick of it, and as someone who has been there, I’m passionate about changing their trajectory.”