Erich Schutz has been a cannabis insurance specialist since around the time it first became legal, dropping into a competitive business with acumen, knowledge and passion. He even adopted a “cannabis ninja” nickname.
Schutz, vice president and cannabis practice leader at Jencap Specialty Insurance Services, is also a father who has been going through some significant challenges.
His son, Wallace David, was diagnosed with Fragile X syndrome, a genetic disorder caused by changes in a gene called Fragile X Messenger Ribonucleoprotein 1. FMR1 usually makes a protein called FMRP that is needed for brain development. People who have FXS do not make this protein.
Males who have FXS usually have some degree of intellectual disability that can range from mild to severe, according to the Centers for Disease Control. Symptoms include: developmental delays; learning disabilities, and social and behavior problems.
The 4-year-old’s difficulties included anxiety, pain, and sleeping was big problem – and that meant sleeping was a big problem for Erich and his wife Lexie.
What was available to help Wally were established pharmaceuticals that did little to relieve some of the symptoms that posed such a challenge to the daily lives of Erich and his family – namely sleep and anxiety reduction.
Then, within the very industry Schutz has worked so long to represent, they found out about a CBD trial for a medication from a company called Zynerba.
The four-month, double blind study, ran through Boston Children’s Hospital, turned out to be a game-changer for them.
Our latest podcast episode featured Schutz talking about his family and the trial. Following are takeaways from that conversation.
“The goal was to treat the symptoms or to treat Fragile X, because what I should say is prior to this, there was never a medication that had been approved to treat Fragile X as a whole,” Schutz said. “They had medications that they would use to treat symptoms. Hyperactivity Ritalin, Adderall. Anxiety, stress – benzodiazepines.”
However, the anxiety and stress, and the lack of sleep and peace for Wally and his family, were still significant.
That’s where there CBD trial comes in.
“So, for Wally and neurodivergent kids, kids with Fragile X like him, they have just a lot of angst,” Schutz said. “And what the CBD does is it removes a lot of that stress. Stress seeing new people, stress even in routines like going from the house to the car to daycare stuff we do five days a week. Shoes are getting thrown and socks are getting ripped off. So, all this time he’s anxious. We’re anxious and it’s tough. Things take that much longer. We have to get up earlier.”
The trial calls for Wally to get a 125-milligram dose that comes in what looks like a ketchup packet this is applied to his upper arms twice per day.
“Now he’s on this medication and all of this sort of low-level to high-level angst and stress that’s around him has been removed,” Schutz said.
He continued: “So, now all this distraction, as I would call it distress, has been replaced with his ability to absorb. Now instead of stressing about ‘Where I’m going, what I’m doing,’ he’s looking at the trees. He’s looking at the cars, he’s saying ‘car,’ he’s saying ‘Trees,” because he’s happier, because he’s not stressed.”
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