In Memory of Charlotte Figi: The Importance of CBD Access

Almost half a million U.S. children have active epilepsy¹, a brain condition that causes recurring seizures. Charlotte Figi was one of these children.

Charlotte’s Story

Diagnosed with Dravet Syndrome, a rare and serious type of epilepsy which can lead to developmental delays and problems with balance and walking², Charlotte experienced her first seizure at just a few months of age. By the time she was six years old, Charlotte was experiencing more than 300 seizures each week, leaving her unable to speak, walk or feed herself without assistance. Despite trying more than 20 prescription medications, Charlotte’s seizures had continued, and she had entered hospice care.

Despite the dire prognosis, Charlotte’s parents refused to give up. Looking through medical research for any last resort options, Charlotte’s mom, Paige, started reading about CBD. In 2012, she connected with a group of brothers who had been developing an extract made from high-CBD, low-THC hemp plants. After getting written permission from Charlotte’s neurologist and pediatrician, they administered the CBD tincture to Charlotte.

By that point, Charlotte was experiencing grand mal seizures every 20 minutes. But within 24 hours of administering the CBD tincture, Charlotte’s seizures had stopped. As time went on, Charlotte experienced a significant reduction in seizures. The young girl was able to start moving without her wheelchair, learning to eat again, and to laugh – a sound her parents had not heard in far too long.

Advocacy and Access

Paige initially hesitated to make Charlotte’s story public, fearing that the results might not last or that they might face backlash. At the time, regulations did not differentiate CBD or hemp products from high-THC and marijuana products. But after a year of watching their daughter respond positively to the CBD tincture, the Figis decided it was time.

“Upon seeing Charlotte’s massive success using CBD: her first dose, her first hour seizure-free, the gift of her big blue eyes opening… I decided I was going to do this work for others,” Paige said. “This was to be shared.”

After sharing Charlotte’s story with CNN, hundreds of parents of children with epilepsy started moving to Colorado to seek access to CBD under the state’s medical marijuana program. Dylan Morley told WBTV in 2014 that he and his wife were moving their three children from North Carolina to Colorado to access CBD for their six-year-old daughter Mia, who had multiple seizures a minute.³ Biagio Burriesci told the Today Show that he and his wife were moving from New York to Colorado with their two-year-old-daughter, Grace, who was  experiencing up to 400 seizures a day.⁴ Kelli Hopkins told the Covington News that after her son died following a seizure, she was moving her three daughters from Georgia to Colorado to access CBD for daughter Michala, who also experienced multiple seizures a day.⁵ Kelli’s husband, Mike, would fly back and forth between his family in Colorado and his job in Georgia, she told the news outlet.

As more and more families moved to Colorado seeking access to CBD, Paige began advocating to change the laws around hemp and CBD access, so that families like hers could seek relief without having to relocate their entire lives.

“A zip code should not dictate a solution,” Paige said.

Their efforts – and Charlotte’s story – led to legislative changes across dozens of states and eventually the federal level, helping to ensure CBD access for millions of children and adults. Charlotte died on April 7, 2020, in the early days of the COVID-19 pandemic. After her death, Colorado Governor Jared Polis officially proclaimed April 7 Charlotte Figi Day, keeping Charlotte’s memory and legacy alive. 

Growing Options and Evolving Regulations

While demand for CBD was growing, and legislative changes were slowly allowing for increased access, our expert botanist was distilling hemp-derived remedies for his family and friends. In 2016, he joined with a group of Colorado natives to found CBDistillery, with the goal of providing high-quality, hemp-derived CBD products to support customers’ health and wellness. When the 2018 Farm Bill de-scheduled hemp and CBD, making them federally legal, it was a pivotal moment in expanding access to CBD for the more than 48 million children and adults who rely on hemp-derived CBD like Charlotte did.

However, while the 2018 Farm Bill was a milestone in lifting federal restrictions, it did not establish a regulatory framework for labelling standards or testing requirements. Many CBD companies follow a similar mission to ours, seeking to provide high-quality, independently-tested CBD products that support their customers’ wellness. But some CBD companies have taken advantage of this lack of regulation, selling products that have not been tested for potency or quality and which may not be accurately labelled.

“Americans deserve to know with confidence what is in the products they are purchasing, doctors require regulation before they can discuss this option with patients, professional athletes must know to the milligram what they put into their bodies, and more,” Paige Figi said. We agree.

Instead of addressing these loopholes with regulations that would protect the individuals who benefit from hemp-derived CBD, federal legislation passed at the end of 2025 is seeking to redefine CBD in a way that would limit access to hemp-derived CBD beginning in November 2026.

We believe this legislation is moving CBD access in the wrong direction, and we’ve joined with mission-driven CBD companies Charlotte’s Web (named for the tincture that helped Charlotte Figi so much) and Cured to do something about it. As OneHemp, our coalition is advocating for federal regulation of hemp-derived CBD as a dietary supplement. We’re advocating for accurate labeling, independent lab testing and consumer protections – without restricting access.

On Charlotte Figi Day, we are not just remembering Charlotte; we are recognizing the immense effort from her mom in fighting for her own child and fighting to create access for other children like Charlotte. We are recognizing the movement her story sparked and the many, many people who have been helped by it. And we are seeking to protect the 48 million Charlottes who rely on hemp-derived CBD today.

Resources

1. Data Research Center. 2022 National Survey of Children’s Health. Accessed Mar. 31, 2026. https://www.childhealthdata.org/browse/survey/results?q=10071&r=1

2. Cleveland Clinic. (2025, July 2). Dravet Syndrome. https://my.clevelandclinic.org/health/diseases/22517-dravet-syndrome

3. Grantham, M. (2014, Mar. 12). Wilmington family says they’ll move for medical marijuana. WBTV. https://www.wbtv.com/story/24834748/wilmington-family-says-theyll-move-for-medical-marijuana/

4. Carroll, L. (2014, Mar. 17). Families with sick kids moving to Colorado for medical marijuana. The Today Show. https://www.today.com/health/families-sick-kids-moving-colorado-medical-marijuana-2D79375046

5. Robins, K. (2014, Sept. 2). Family to move to CO for med. marijuana. The Covington News. https://www.covnews.com/news/family-to-move-to-co-for-med-marijuana/