Thursday, September 18, 2014

Why a Chemist Mom Turned Medical Cannabis Advocate

Parents Coalition for Rescheduling Medical Cannabis co-founder, Gena Dalton of Alabama, was recently featured on the front page of The Huntsville Times.

Gena's daughter, Charlotte, who was eventually diagnosed with Dravet Syndrome, had her first status seizure at seven months old. It lasted thirty minutes. One month later, in March of 2013, the infant had another status seizure, this time for forty-five minutes.

The local hospital had no sense of urgency. Sometimes babies have seizures, Dalton was told, as Charlotte was sent home with an appointment for the following month. Not having it, Gena quickly got her baby into LeBonheur Children's Hospital in Memphis for extensive testing.  "Mid-May I get a call from a neurologist at LeBonheur: Charlotte had a sodium channel deletion (Dravet Syndrome). He told me whatever I do, don't read the internet. Of course, the first thing I do is read the internet."

Gena found an article in the Colorado Gazette about a little girl, also named Charlotte, who has Dravet Syndrome and experienced dramatic seizure reduction on cannabis oil. Though the medical details reminded Dalton of her own Charlotte, this straight-laced mother and chemist assumed it was just pro-marijuana propaganda. "Wouldn't researchers and the government already have a handle in this to help thousands of suffering children? Wouldn't something this simple already be considered?"

For Gena, what follows has the feel of destiny. "By late summer 2013 I went through a period of hard depression and grief. I never watch TV. Ever. But for some odd reason, in late August I turned it on. As fate would have it, CNN's documentary WEED aired that night." That's when she knew this was real.

Dalton was thrilled the help her daughter needed existed but heartbroken that it was inaccessible. Illegal even. Nevertheless, she was now a mom on a mission. Gena wrote dozens of letters to politicians sharing Charlotte's story and asking for help. The negative replies were piling up when one legislator, Mike Ball, asked for more information.

While Gena and her mother set about shoring up Mike Ball's support, police officer dad Dustin Chandler was forging a coalition across the state. "I went on a stalking mission to find Dustin. I knew if we worked together we would accomplish more together than separately."

Gena, Dustin, and other Alabama parents were crucial to the passage of Carly's Law, legislation that allows the University of Alabama to conduct a CBD oil trial for epilepsy, but their victory was hard won. "We were told, 'Can't you guys just wait until next year when we don't have to worry about reelection?' NO!, we said. Our children might not be alive next year." After many media appearances and trips to the state house in Montgomery, Carly's Law passed. Unanimously.

As fate would have it, Gena's work was far from over. "You know, everything has a place and a reason, though we may not be able to see it at the time. Back in March, my family, shoot, the entire state, was ecstatic." However, Gena's joy quickly transmuted to guilt and grief when the CBD bill in nearby Georgia failed to pass due to partisan politics.

"I literally cried when I found out Georgia's HB 885 had failed.", said Gena. "We live in America. How could one state support initiatives to help sick children and another a few miles away did not? I thought about the children in Georgia going without and the families feeling desperate and hopeless. It hurt my soul. I called Dustin nearly in tears saying, 'We have to do something!'. He put me in touch with Corey Lowe in Georgia and BAM!, you guys were born.", Dalton told fellow Parents Coalition members on our leadership organizing page. "Had HB 885 passed, we wouldn't be here on this thread tonight."

Parents across the country who, like Gena, helped pass medical cannabis legislation in home states hit roadblocks accessing these laws for their children due to federal restrictions. The Parents Coalition for Rescheduling Medical Cannabis advocates the removal of cannabis from Schedule 1 so research can happen in the United States and patients can have safe access. To join our efforts contact us at cbdoilky@gmail com or visit our Facebook page.

1 comment:

  1. It's good that Gena followed her gut. It's amazing that she did not stand for her child's medicine being inaccessible or illegal. The medicinal use of cannabis has been controversial for quite some time, and though I think this is the best year to settle that once and for all, no bill will pass if parents like Gena wouldn't fight for it to happen. Thanks for sharing that story with us! Keep us posted for more. All the best! :)

    Arthur Andreas @ KushGo