Josh Carter Hopes to Finish What His Late Grandma Rosalynn Started as a Next-Gen Caregiving Advocate (Exclusive)

"I'm still working on goals that she set forward years ago, and I'm making a lot of progress," says Josh, whose young son was diagnosed with a chronic disorder. "It's an incredibly rewarding portion of my life"

Josh Carter is on a mission to further the advocacy that his late grandmother, Rosalynn Carter, started in the caregiving space.

Josh, 40, is a sandwich generation caregiver who has stepped in to help multiple ailing grandparents, including his maternal grandmother, Dorothy Davis, who suffered from severe memory loss after experiencing a stroke.

The issue of caregiving hit even closer to home when his youngest son, Jonathan, was diagnosed with a rare and chronic intestinal disorder as an infant that is remarkably expensive to treat and can be fatal if not managed properly.

"When [my wife] Sarah and I were trying to figure out anything about this disease — very early onset inflammatory bowel disease — we had no information for parents on how to take care of it and how to manage it," he recalls in conversation with PEOPLE. "It was a miserable, stressful diagnosis."

As they dug into "raw research" on VEO-IBD and read studies that doctors had published in the late-'90s and early 2000s, they were horrified to find that a handful of kids who had been diagnosed died while they were being studied.

Related: Rosalynn Carter's Grandson Shares His Caregiving Experience in New Film Produced by Bradley Cooper (Exclusive)

At the time, Josh says they felt fortunate to have Rosalynn just a phone call away.

"My grandmother Rosalynn, who we called 'Mom,' was so involved in Jonathan's care because she wanted to know what was happening with her great-grandbaby," Josh says. "And in fact, I think that there was a time when she was one of the most knowledgeable people in the family on what Jonathan's condition was, what was happening with him, where he was, what the challenges are."

Related: How Rosalynn Carter’s Focus on Caregivers Fit into the Broader Theme of Her ‘Enduring’ Mental Health Activism

Though Jonathan is now a kindergartener and has found a "$300,000 per year" treatment that keeps his symptoms under control, the troubling and costly experience of getting to this point inspired Josh and Sarah to found The VEO-IBD Foundation, "the first and only organization dedicated to parents and caregivers of children that have this disease."

"We know how hard it is from an emotional standpoint, from a financial standpoint, from just stress, and from a loneliness standpoint," Josh says.

In addition to building a community around parents of children with VEO-IBD, Josh now acts as a spokesperson for the Rosalynn Carter Institute for Caregivers, an organization established by the former first lady in 1987 to develop evidence-based programs and fight for better public policy surrounding caregivers.

On Monday, Oct. 7, Josh participated in a panel with PEOPLE editor-in-chief Wendy Naugle at the United Nations' International Day of Older Persons to speak on his family's passion for caregiving advocacy and to highlight the need for stronger support services.

He also recently partnered with Washington, D.C.-based public broadcasting station WETA for their months-long documentary project about caregivers to share his story.

Never miss a story — sign up for PEOPLE's free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer.

As Josh continues his grandmother's public work on the topic, he is often reminded of the words Rosalynn famously spoke while testifying before the U.S. Senate in 2011: "There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."

The idea that caregiving is universal, yet feels isolating to those actively going through it, reminds him that it's a cause worth bringing attention to.

Related: Rosalynn Carter’s Tireless Advocacy on Topics of Mental Health and Caregiving Comes Full Circle

Josh isn't the only family member working to further his grandparents' legacy. After Rosalynn's death in November 2023, and as former President Jimmy Carter nears 20 months in hospice care, a new generation of Carter advocates has entered the spotlight.

Josh's cousin Jason Carter, for example, graduated from his career in state politics to chair the board of trustees for The Carter Center, an international organization founded after Jimmy and Rosalynn left the White House that pushes to advance human rights, wage peace and fight disease.

"We talked about this, we talked about what it's going to look like [after they're gone], what our plans are, and it's so interesting how organically we've fallen into some of the footsteps that my grandfather and grandmother left for us," Josh says.

"The caregiving piece that my grandmother started advocating for in 1971 and started living when she was 12 years old, 13 years old, is something that I'm able to carry forward with my wife, and hopefully continue to make the differences that she wanted to make," he adds. "I'm still working on goals that she set forward years ago, and I'm making a lot of progress on those goals. It's an incredibly rewarding portion of my life."

For more People news, make sure to sign up for our newsletter!

Read the original article on People.