Jessie Rees Foundation keeps delivering joy, and new movie could help with grief

As mission statements go, “create joy” might be as close to perfect as it gets for any business, nonprofit or otherwise.

The reasons for that are pretty easy to understand. Joy is simple. Joy is cheap (usually, at least; it isn’t really about money.) And, as products or services go, joy is wildly popular; everybody – no, really, everybody – wants it.

Still, as cool as the idea of creating joy might seem, it’s far from easy.

“This is a great job, but it’s a lot,” said Erik Rees, describing his life as chief executive of the Jessie Rees Foundation, the Irvine-based nonprofit that supports kids and families as they battle pediatric cancer.

“And I only have to do two things every day: raise money and bring joy. If I’m not doing those two things, then I’m not doing what we’re supposed to be doing; I’m not furthering what Jessie started.”

What the late Jessie Rees started, of course, is an often-told story that, over the past 15 years, has been “furthered” pretty extensively.

The foundation that began in the family’s Rancho Santa Margarita garage has grown into an international brand, providing an essential emotional support system for thousands of families.

Rees, a former pastor at Saddleback Church, has written books and relayed his family nonprofit’s message in everything from news stories to radio shows to podcasts. The foundation has gotten the word out in other ways, too: public speaking, volunteer events, a YouTube video series, an iPhone app.

And, as of this week, the Jessie Rees Foundation has something new: a movie.

The short film, “White Room,” will debut Wednesday, Oct 21, at the Newport Beach Film Festival – at The Lot at 3:30 p.m. and Big Newport at 6 p.m. It was written and directed by Jessie’s little brother, JT Rees, now 24. He financed the film via a Kickstarter campaign, but the foundation helped facilitate production and will be a key player in showing the film in the future.

The plot of “White Room” is simple: It tracks a young man, named Reese, as he talks with a counselor and the ghost of his sister to understand the grief he still feels from her death years earlier; grief that, until the outset of the movie, the 20-something character actively suppressed.

JT Rees said his 12-minute movie is “only semi-autobiographical,” and that the story strays from his own in some ways.

But he also said the movie’s theme is an idea he’s intimately familiar with.

“Grief can linger, sometimes long after the world expects us to move forward.”

The movie also is a milestone of sorts for the foundation. The nonprofit that specializes in joy – and delivers it to thousands of kids and families – is evolving, yet again, to help people deal with something very different. It’ll be shown by the nonprofit to families struggling with the loss of their child.

“The foundation’s goal is to always be there for the family. That doesn’t end when the child wins their fight with cancer or, sadly, loses it,” JT Rees said.

“We want to stay with them the entire way. This movie will be part of that.”

“The foundation continues with what Jessie started,” he added.

“Her message, I think, was powerful.”

Honesty is power

Her message also is still relevant.

In the spring of 2011, the Rees family’s middle kid, 11-year-old Jessie Joy Rees, was an outpatient at Children’s Hospital of Orange County, having recently been diagnosed with brain cancer.

But Jessie, according to her parents and Jessie’s own writings, found solace by focusing on the other kids in the oncology ward, the kids who couldn’t go home from the hospital at night. Those kids were really struggling, she told her parents, and they needed something to make them smile.

So, a few weeks into her treatments, she started coloring brown paper bags so that they would be appropriate vessels for the Beanie Babies (her Beanie Babies) that she planned to give to those other kids.

After tweaking the details slightly, the Rees family began distributing “Joy Jars” – clear plastic bottles stuffed with tiny games and plushies and other stuff that might make a young cancer patient’s day slightly better – to patients at CHOC and elsewhere. Over the next nine months, Jessie and the rest of the Rees family – including Erik and Jessie’s mother, Stacey, and her siblings, older sister Shaya and younger brother JT – gave out about 3,000 Joy Jars.

Also, during that time, Jessie – and, more importantly, her attitude – became famous.

Her story was told in newspapers and magazines. She was on CBS News and she was a guest presenter on “American Idol.” As the story spread, her online following grew, and when Jessie died, she was close to reaching her goal of 50,000 friends, or one for every kid in America who at that time was fighting cancer.

Her passing, on Jan. 5, 2012, at the age of 12, made news on at least three continents.

While she fought cancer, Jessie blogged doggedly about her illness and her life. The messages differed, but each Facebook post ended with the words or the acronym that remain the slogan for the nonprofit that bears her name, NEGU (pronounced knee-goo), which means “never, ever give up.”

The concept was solid enough, of course, but that wasn’t what turned Jessie and NEGU and the jars into a lasting thing.

Authenticity did that.

Joy Jars weren’t about trying to build a brand or make a buck or do anything more complicated than simply helping other kids battling cancer feel a little less alone. When Jessie Rees told people to never, ever give up, it wasn’t empty talk; it was sharing an attitude that gave meaning to her life.

Erik Rees still pushes to keep to those basics.

But the nonprofit that the Rees family started when Jessie was alive is bigger and far more complex than anything she might’ve imagined. The operation today works out of a 6,500-square-foot warehouse and office complex in Irvine (nicknamed the Joy Factory), where dozens of volunteers put together Joy Jars for kids all over the country. (Each jar is individually curated with items aimed at specific genders and age groups and, to date, nearly 600,000 have been given out in every state and 53 countries.)

The foundation also has raised about $50 million over the past 15 years, getting contributions from individuals and huge corporate donors. Its website, negu.org, says the foundation has given roughly $3.2 million in financial assistance to help cancer-affected families.

The foundation owns property near Palm Springs where cancer-fighting families can briefly recharge. It offers couples counseling and grief support. There is help for kids who beat cancer and seek an answer to the question, “Now what?”

Erik Rees said he gets advice on business and operational issues from a board of directors. And the foundation has a list of well-known (or sort of well-known but enthusiastic) NEGU ambassadors – active NFL quarterbacks like Sam Darnold and Josh Allen; retired NFL quarterbacks Jordan Palmer and Kyle Allen; NASCAR driver Corey LaJoie; Olympians, soccer players, late NBA legend Kobe Bryant. Bracelets emblazoned with the NEGU logo reportedly have been on seven Sports Illustrated covers.

Sadly, the market for what the foundation provides – emotional support for families battling pediatric cancer – isn’t going away.

Though most cancers, overall, are less lethal today than they were at the start of the century, the gains haven’t been as profound for kids with cancer. In fact, while pediatric cancer remains relatively rare, kids today are slightly more likely to receive a cancer diagnosis than they were when Jessie was alive.

Overall, about 15,500 kids in the United States (and 400,000 children around the world) are diagnosed with some form of cancer each year, and the domestic death toll from pediatric cancers is about 1,800 kids annually, or nearly five kids a day.

“We’re not on the cure side of this; we’re on the care side. And there’s still a huge need for what we provide, still a need for joy,” Erik Rees said.

Though it’s been 15-plus years since the foundation was started, Erik Rees says running it can still be an 80-hour-a-week job. And while he has no immediate plans to leave, he said that he’d someday like to return to the ministry.

Bringing joy, he argues, can happen in different settings.

“Part of what I’m hoping to do, right now, is to make the foundation a little less Erik-focused. But we’ll see. I still love this, as hard as it can be.”

The other hard part of the job is simple: It’s a reminder of what the family lost.

Erik Rees said he and Stacey still live in the same house they lived in when Jessie died. They’ve watched her friends grow up and graduate from school and begin their lives. They imagine what Jessie’s life would be like if she’d lived.

The world has moved forward. And while their loss has evolved, it hasn’t gone away.

“We still think about her every day,” he said. “I think she’d be proud of what we’ve done.”

JT Rees echoed that.

Though he wants to work in film, not at the nonprofit, JT Rees said he and his sister Shaya grew up thinking of the foundation as “sort of part of our family.”

That, he added, hasn’t always been easy.

“It’s kind of intimidating,” he said.

“My sister started this movement, this great thing. It’s our job to live up to it.”