By now, the story of Charlotte Figi has been heard around the world. 

The namesake for the company Charlotte’s Web, Charlotte was the first person to experience life-changing treatment for her seizures from CBD made by the Stanley brothers in 2012. 

Perhaps lesser known are the stories of the other families who have been helped by Charlotte’s Web, like Heather Jackson and her son, Zaki, who were the second people to find success for seizures through CBD.

“Even though it was 10 years ago, I remember it like it was yesterday,” Jackson says about the day she first gave CBD to her son, who, like Charlotte, has a rare form of epilepsy. 

Zaki had been having frequent, severe seizures every night when he took his first dose of Charlotte’s Web CBD in a makeshift bed in hospice care, Jackson says.

“He didn’t have a seizure that night. It was the first night in almost a decade,” Jackson says. Zaki, who was not expected to see adulthood, will turn 19 this year.

Since 2012, Charlotte’s Web (founded by the Stanleys) has helped hundreds of families and experienced exponential growth, in part due to being highlighted in the 2013 CNN documentary Weed.

Now, ten years since they set out on their mission to help families in need–and two years since Charlotte’s passing at age 13–the Stanleys are reflecting on how far they’ve come and what the future holds for not only the company, but also the industry as a whole.

Building a Community

The seven Stanley brothers banded together in 2009 under Colorado’s medical marijuana caregiver program in pursuit of a cannabis formula that might benefit their cousin, who had been diagnosed with cancer. They sought cannabis with therapeutic effects without the psychoactive properties driven by THC.

After scouring the state for feral hemp, which often contains low THC content, they began breeding those genetics and landed on a CBD-dominant formula.

There was one problem: they had nowhere to sell it. At the time, THC was still the desired, dominant cannabinoid in the state’s medical cannabis program, and the brothers drove themselves into debt chasing CBD.

RELATED: How Charlotte’s Web is Navigating an Evolving Industry

That is, until Charlotte’s parents caught wind of what the brothers had been doing. The Figis had seen a video of a boy in California who was using CBD to treat seizures, and they met with the Stanleys in attempt to do the same. Charlotte was 5 at the time.

“That day, that meeting would not only change my life forever, but it would really be ground-zero for the CBD industry,” says Joel Stanley, co-founder of Charlotte’s Web. “Charlotte would go seizure-free for up to a month sometimes.”

Joel Stanley

Word spread about the Stanleys’ formula. Soon after Charlotte found success, Jackson contacted the brothers to seek help for Zaki.

“Charlotte was the light that illuminated that path for my family and tens of thousands of others, and her family’s courage allowed us to see a new way–a new way where you can be empowered to take control of your own health,” Jackson says.

Between the Stanley brothers’ documentary feature and Jackson co-founding Realm of Caring along with Paige Figi, a nonprofit dedicated to researching CBD and helping families in need access it, Charlotte’s Web took off.

Jared Stanley, one of the brothers who co-founded Charlotte’s Web, says more than 500 families moved to Colorado in those early years to gain access to CBD. They came to be known as the “Colorado refugees.”

“We would have Christmas parties together–bonfires with these folks,” Joel Stanley says.

Charlotte’s Web’s waitlist grew to include around 15,000 people by 2014.

A Plea for Regulation

Much has changed since those early days of Charlotte’s Web success. The 2018 Farm Bill fully legalized hemp production nationally, opening up the market to a flood of CBD products. CBD has grown from a non-existent industry to one worth an estimated $4.7 billion as of 2021, according to Brightfield Group.

While the Stanley brothers see positivity in the growth, they have also seen how advancement has been stifled by a lack of regulations.

“We saw the industry explode in many good ways, but also in some damaging ways,” Joel Stanley says. “It was bittersweet for us because we knew that this needed to grow, we knew it could help so many people, but what was unfortunate was that there was no regulation. And there’s still not enough regulation on this today.”
While the Stanley brothers and Jackson say they have worked with more than 20 states to help them develop their own set of CBD regulations, they agree that regulation needs to come at a federal level.

Joel Stanley points to the lack of quality control in the industry, citing studies that have shown a significant portion of CBD products on the market are mislabeled.

RELATED: FDA’s Latest Report Finds Less Than Half of CBD Products Accurately Labeled

“This industry needs to envelope itself now in integrity moving forward,” Joel Stanley says. “I don’t know how many thousands of people this last decade may have tried a CBD product because they thought it might work for them, … but now they’ll never know because in their mind, they think, ‘I tried that and it’s not working.’”

Jackson adds that accessibility and sometimes affordability are still issues for families that could be solved with federal regulation.

“Even after ten years, we really still need the federal government to stop being silent when it comes to hemp and CBD regulations, and even more broadly, cannabis,” Jackson says. “We need them to say this is a dietary supplement. … We need to allow people to not live in this grey area as it is now.”

Charlotte’s Web submitted an application to the FDA requesting approval of a full-spectrum hemp extract last year, but the FDA rejected the application because of CBD’s approval as an active ingredient in the pharmaceutical drug Epidiolex.

Jared Stanley

Now, Charlotte’s Web is looking to an act of Congress to help push CBD legalization and FDA approval forward.

“We’re extremely surprised by how slow-moving regulations have been,” Jared Stanley says, noting that House Resolution 841, which would require the FDA to create a regulatory pathway for CBD, recently moved into committee for a vote. “We believe this is the path that really has to force the FDA’s hand at this point.”

Looking Ahead

When regulation does come, the Stanley brothers anticipate another wave of growth in the CBD industry, not only in popularity among consumers but also in research and physician advocacy.

“What we’ve heard is ‘Oh, that’s just a fad,’” Joel Stanley says, referring to CBD use. “It’s not a fad to people relying on it daily. It’s going to continue to steadily grow for people who truly need it.”

Until then, the Stanleys say Charlotte’s Web intends to continue focusing on research and product development for CBD, as well as other minor cannabinoids.

The company is also continuing its own mission to provide more families in need with quality product. On April 7–the two-year anniversary of Charlotte Figi’s death–the company announced it will be starting a family grant program to support 10 families with free product for a year. Put into context, Jared Stanley says product can cost upwards of $10,000 a month for families who use it.

The families receiving free product hail from six different states and were selected by the Realm of Caring. One family will be added to the program per year.

As the Stanleys look ahead to the next decade, they say Charlotte continues to serve as an inspiration. But her story extends far beyond the company’s growth.

“For me, Charlotte represents a healthcare revolution,” Jackson says. “It’s a revolution that is bolstering sovereignty over our own healthcare decisions, our own choices to use plants and to use botanicals. And this doesn’t only change health outcomes and improve quality of life, but it changes the entire trajectory of a family. …  She represents the movement that is in fact not done.”