There's no doubt that marijuana saved Charlotte Figi's life.
Her seizures started when she was 3 months old, and she was later diagnosed with Dravet syndrome. The lifelong disorder is caused by a gene mutation in the brain that results in developmental disabilities as well as the type of grand mal seizures Charlotte was experiencing up to 50 times a day. She had trouble walking, required a feeding tube, and was nonreactive to a bevy of medications such as clonazepam, valproate and Valium.
Charlotte's parents, who live with their daughter in Black Forest, even tried putting the toddler on the high-fat ketogenic diet, which has helped other epilepsy sufferers, but to no avail.
The Figis then found the Stanley brothers, a family of regional marijuana growers who turned a perennial also-ran — Hippie's Disappointment, a CBD-rich strain of cannabis with little to no psychoactive effect — into the nationally known Charlotte's Web. The child, now 7, bears little resemblance to her formerly tortured self, and laws are now changing across the country to accommodate oil made from the strain. A Pennsylvania congressman even recently introduced the Charlotte's Web Medical Hemp Act of 2014.
Meanwhile, hundreds of families have moved to Colorado in search of help via the Stanleys' nonprofit organization, Realm of Caring. There's been a hitch, though: Not every afflicted person has experienced the same kind of dramatic improvement seen by Charlotte, and some have even seen symptoms worsen.
Digging into genetics
It's the "why" that's sought by a new study initiated by Realm of Caring and performed by Dr. Edward Maa, the chief neurosurgeon of the comprehensive epilepsy program at Denver Health and member of the University of Colorado-Denver's department of neurology. It's the first to directly study the link between Charlotte's Web and Dravet syndrome, though at least one study of similar scope was published last December.
"Right now, my understanding is that the Realm of Caring is between harvests, so there are several dozen people on the waiting list who are interested but not yet started, and those are the people that we are primarily targeting," Maa says in a phone interview. "Can we see what their seizure frequency baseline is before they get started, and then see what it looks like after they get started, and then separate those two groups?"
This would be done by logging a month's worth of baseline diary entries from some 30 participating individuals from before treatment with Charlotte's Web, and then for three months afterward. They would then be divided into two groups: Those who responded with a decrease in seizures of greater than 50 percent, and those who did not. Saliva samples would also be collected, to be genetically analyzed by Courtagen Life Sciences, a Massachusetts-based laboratory working on the study pro bono. Once that data is known, Courtagen would do intergroup profiling to try to find similarities and differences in the genetic samples.
"The results are hoped to show a couple different things," Maa says. "One: If we can predict who with Dravet would do well, then we can actually use this as a screen and say, 'Hey, you don't have to move from New Jersey' unless you are likely to do well on this. And the second is that, if there is a locus, a focus of where the genetic difference lies, that might actually give us information about why CBD has anti-epileptic properties at all. We don't [currently] know this."
A good surprise
Emails to Realm of Caring bounced back, and nobody was available by phone, but Jesse Stanley wrote last August that the brothers were surprised about the strain's effect. "When we first got started we had no idea it could stop seizures," he wrote in a Q&A on reddit.com. "We knew CBD had loads of medicinal benefits but beyond this basic knowledge we had no idea what we were breeding and growing."
Everybody knows now, though, and with the help of Maa, will know even more by February 2016. The study could run longer, though, as the neurosurgeon hopes to apply for funds from the Colorado Department of Public Health and Environment's $10 million Medical Marijuana Research Grant Program, which opened last week.
"The grant program shall be limited to providing for objective scientific research to ascertain the efficacy of marijuana as part of medical atreatment and ... shall fund observational trials and clinical trials," says the state, with applications due Oct. 14.
With new laws, new money and old science, says Maa, "The research environment is very exciting, right now, surrounding the cannabinoids and epilepsy."