By Fred Gardner There is a point at which a story achieves critical mass —it goes from being a matter of interest to a fraction of the public to one that everyone’s talking about, inescapable in the media. That point in the medical cannabis story was reached last August when Sanjay Gupta, MD, narrated an hour-long “Special Report” on CNN that provided dramatic examples of Cannabis exerting beneficial effects. Most memorable was the return to health of a five-year old in Colorado Springs, Charlotte Figi, afflicted with Dravet Syndrome, a severe form of epilepsy.
Charlotte’s parents told Gupta how her condition worsened as every conventional treatment failed. She was having hundreds of seizures a day and the doctors were considering inducing a coma to save her life. Her dad, a Special Forces soldier deployed to Afghanistan, researched epilepsy treatments on the web and learned about CBD. Desperate, the Figis bought $800 worth of CBD-rich Cannabis at a dispensary and a friend helped them extract the medicine for under-the-tongue application. Charlotte’s seizures went down to one a week and and she began recovering!
A Colorado grower named Joel Stanley and his brothers supplied the Figis with Cannabis tincture made from plants with a CBD-to-THC ratio greater than 20-to-1, and renamed their strain “Charlotte’s Web” —CW, for short. Other parents of kids with severe epilepsy began contacting the Stanley Bros. with urgent requests for CBD-rich medicine. The brothers created a non-profit called the Realm of Caring Foundation to facilitate distribution; Paige Figi works for RoC as a volunteer.
“To date there are 179 children and 27 adults on CW,” according to Heather Jackson, RoC’s executive director. “There are 345 patients in the Realm of Caring program,” she adds, “so about 1/3 use other strains for their symptoms and diagnoses like cancer, ALS, pain etc. The Realm of Caring does not charge for their services.”
Desperate parents have been moving to Colorado to expedite access to CBD-rich Cannabis for their kids. In many states, politicians and activist parents are pushing legislation to legalize CBD (while maintaining the prohibition of THC). The Stanley brothers have testified in support of CBD-only bills in Florida, Alabama, Kentucky, Nebraska, Utah, New York, California, Georgia, Oklahoma, Maryland, Vermont, Wisconsin, Pennsylvania, and Illinois.
Among those who contacted the Stanley brothers in 2013 was Ray Mirzabegian, the father of a Dravet syndrome patient named Emily, who was nine years old. After many trips to Colorado, Mirzabegian was provided with Charlotte Web seeds (said to have been stabilized by the Stanley brothers over the course of several years). He was also authorized to launch Realm of Caring California, a subsidiary of the foundation the Stanleys created. Mirzabegian is now growing out Charlotte’s Web plants as per the Stanleys’ specifications, and arranging to distribute the CBD-rich oil that will be extracted from them. On Feb. 23 in Milpitas he updated 120 parents of pediatric epilepsy patients on the state of his grow.
Mirzabegian’s talk followed a presentation by Bonnie Goldstein, MD, the director of Canna-Care Centers, reviewing what doctors and scientists know about Cannabis as medicine. Realm of Caring California had organized two previous seminars in southern California, where Goldstein and Mirzabegian are based.
Many in the Milpitas audience were on the waiting list for CBD-rich oil from the Charlotte’s Web plants that Mirzabegian is growing at three locations in Southern California. “No more than ninety-nine plants per facility,” he explained. “We are doing everything legally.” He gave up a career teaching opticians to grow medical cannabis for his daughter Emily, now 10, and others in urgent need. His brothers Alfred, a general contractor, and John, a hair-transplant technician, are also spending 14-15 hours a day growing plants organically for RoC California.
Ray Mirzabegian seemed, to your correspondent, completely sincere and likable. He is 40, grew up and lives in the Los Angeles area; speaks almost perfect English with an Armenian accent. Transcribing Mirzabegian’s talk from a tape, I hear the singsong of infants in strollers and the occasional moan of a teenager in a wheelchair. The audience was utterly rapt. Excerpts follow:
…Because of her uncontrolled seizures —despite numerous medications and a ton of other treatments that failed— about a year and a half ago after I watched the Stanley Brothers in a documentary [“American Weed” on the National Geographic Channel]. I traveled to Colorado several times… And I was able to obtain Charlotte’s Web for my daughter first and then for everybody else because it would not be fair to just do it for myself.
About a year ago I went into an agreement with Realm of Caring Foundation to start growing plants here and offering oil to patients in California who needed it. It took about three months to realize how severely California needed this medicine. The waiting list right now is about 400 plus patients. Mostly pediatric patients but also patients with other severe problems.
I haven’t really advertised it —just word of mouth and Facebook groups.
I’m working very hard to establish what is required legally and to do it 100 percent in a legal way and to learn how to do it right. I don’t come from a background of growing. I’m a professor. Was. Concluded my career about a month ago. I used to teach opticians in college for 20 years. But it took about a year or so to learn the science of growing this plant the right way —meaning to make sure that it’s organic, that it’s clean, that there’s no pesticide, molds, anything else. To make sure that it’s a quality product, because after all, I’m going to give it to my daughter…
So I traveled to Colorado and got trained with the help of the Realm of Caring Foundation and the Stanley Brothers University. We’re copying exactly every single thing that they’re doing so there’s absolutely no difference between the Charlotte’s Web that you’re getting in California than in Colorado.
They’re the Colorado brothers and we’re the California brothers —Alfred, a general contractor, and John, a hair transplant technician: they are your farmers (sustained applause). We’re putting 14 to 16 hours a day into this. Doing whatever it takes to make this happen. They put everything aside about a year ago. We put everything else on hold and we’re gonna go for it. There are now a lot of plants growing and soon to be harvested.
Credit also to my right hand, left hand, she does everything for Realm of Caring, Cindy Mitchell.
I wanted this oil because my daughter was having many, many seizures. She had tried 13 medications that did not work. The ketogenic diet [an anti-seizure diet low-in-carbs, high-in-fats] worked for about six months and then seizures slowly started coming back. About a year after the diet my wife and I sat down and said that she has absolutely no quality of life. She was depressed because she couldn’t eat anything at school or at home. We could have tweaked it more but we thought it’s not really working. So we decided to stop the ketogenic diet and sure enough Lauren’s seizures came back.
At a very well known epilepsy center in Southern California they casually pulled us aside and said “There’s really nothing else we can do for you guys, we suggest that you go home and enjoy your daughter as best you can.” So we went home very disappointed and upset. We saw about eight or nine neurologists after that until we found one AT UCLA who was willing to sit down and listen to us and communicate and have a conversation. Our neurologist is very supportive of the parent’s right to try something like CBD, especially since we’ve tried everything else. I talk to him frequently and he’s interested in the feedback about the patients, about my daughter.
He’s also supporting me in tapering the medications because they’re not working and all were getting is negative side effects. If the medication is helping, I can understand putting up with the side effects. But if there’s no seizure control… For instance, speech fluency: on Depakote it was like someone pushed the mute button on her. She’s speaking more and more ever since we started CBD and were able to take her off the medicine. (Applause)
I went to Colorado asking for this and came back empty handed because its illegal to transfer. I was home and my daughter was having a seizure and I was so upset and so angry because there is something that might help my daughter! I started looking throughout California dispensaries. I purchased bottles and bottles of stuff. I didn’t know that you could test it, so I just tried it on my daughter. Honestly, nothing worked. I was seeing Charlotte’s story on CNN and I went back to Colorado and I came back and said I’m going to start a waiting list and a Facebook group to show these guys that there’s a demand for this product. I emailed one of the Stanley brothers and he answered the next day. Then I went to Colorado. He said “We get about a thousand emails every week and we forward them to the foundation but I decided to answer yours, I don’t know why, and here you are.”
I brought back a limited quantity of seeds. So I had to grow and grow and grow and clone and clone and clone and clone because I had 400 patients waiting for it. I have a feeling that number is going grow after the second documentary on CNN with Dr. Sanjay Gupta in a few weeks.
Shows pictures of growing plants. The leaf of Charlotte’s Web appears to be streaked with yellow —variegated in color— which is sometimes caused by a virus. Could a virus have given this chemovar unique properties?)
Its a beautiful plant. Very different from everything else that I’ve seen. It’s a very fragile plant. It requires a lot of love and singing and taking care of.
That’s what we’re doing. Every single one of these plants has a patient’s name on it. So if you’re on the waiting list and I have your recommendation, your child’s name is on one of these plants… We want to do this whole thing legally so we’re creating a collective and resource center so I can have all of you as my patients and we’ll do it as legally as possible in California… California Laws are extremely tough and limited. I am allowed to grow 99 plants in a facility —and that’s all I’m doing, because I’m not planning on going to jail for years and years. But that makes it very tough to meet the demand and forces us to have several facilities to meet the demand.
The cost of doing everything is much higher in California, but whatever it is, who cares? We’re going to do this the right way. We’re going to offer this at wholesale prices. Not like everybody else —or most people. There are some good collectives in California who are trying to do some good things, and I support them. But there are also a lot of people who are trying to cash in on the CBD rush and they’re looking for desperate parents like us. They’re charging a whole bunch of money for God knows what they’re giving you. We’re not trying to do that. We’re trying to keep it as low cost as possible for everybody. I’m going to try everything I can to keep it lower that anybody else. I didn’t get into this because of the business factor. I got into this because of my daughter.
Emily is almost medication free now. Applause At times she’s been on four different meds and on those she’s had several seizures a week. She’s now eating everything on her own, socializing, running, jumping you name it. And since tapering off the last Benzo medication she’s on Clozapine and it’s just done so much damage. Even when we’re tapering this medication she’s averaging one seizure every 10 days.
I’m hopeful that once we’re completely off the meds, that the right dose of CBD, the right ratio, I hope she can have the success of Charlotte and Zaki? and everyone else who is seizure- and medication-free. There are a couple of things wrong with my daughter. One was the the grand epilepsy that was diagnosed, but the side effects of the medications were even worse. She was so much worse when she was on these medications. Obviously less seizures, but also less side effects of the medications.
I talk about this with my —her— neurologist. We send each other articles and research. We communicate. I finally found a good one who listens, who researches. And I suggest you do the same. And I suggest that you do not touch this medication unless you have that doctor who is supporting you. Because, man, these withdrawals can be crazy and they’re scary sometimes. But if you have the right doctor to guide you through it, you understand that it’s okay what you’re going through, and that it will pass. And you can call the doctor and ask, “Should I go to the hospital or not?” We haven’t been to any hospital for three years now. There are a lot of success stories out there. Not just from Realm of Caring but every company that’s offering marijuana as a medicine. It’s a one-on-one personal thing. Some people do okay, some people do great, some people need more time to find the right dose.
And that’s something that we all need to understand. We have to have discussions within our groups —What times of day? how many milliliters? Before or after meals?… All of that stuff. Try and try and document everything. One of the biggest things that helped her was at 4:30 in the morning we gave her half a milligram of CBD while she was sleeping. And that was such a big change in her. It almost completely stopped her seizures that happened in the early morning. These are the things you have to understand. You have to try it. You have to give it time. You have to document everything
If you have a good neurologist, if you have a good doctor like Doctor Goldstein who is always available for patients, if you have this team and this support system, give it time and it will work. It’s not that one magic pill… Sometimes it could even be worse. Because it affects medication levels. It affects the way the brain functions. So, don’t be afraid, just document everything and talk to the doctor and give it a real shot. Once you give it a real shot you can decide if it’s working or not.
There’s a lot of discussion going on about THCA and THC. Some will do great on it. Some will do great on CBD only. It’s so hard for me to tell all 400 people to just hang in there and wait. I wish there was something I could do to make these plants grow faster —and there is, but I’m not going to do it. Because I want to grow organically, no extra hormones or… (Applause.)
So, we’re almost there. If all goes well, I should have three harvests in 2014. And between those three harvests I’m hoping everybody will get their medicine. (Applause.) We’re almost there, hang in there. When it’s ready I’ll call you or I’ll email you.
We’re also traveling around talking to a lot of council members and authorities. We’re not just trying to grow this plant and sell it. The point is not business and to make money. If I wanted to sell it at a much higher rate then I’d make a ton of money in a year and I’d close shop and I’d be good to go. But I’m not going to do that. I don’t want to do that. I want to use every single one of our success stories and I want to present in front of counties, authorities, media, I want us to have a voice.
For about nine years I traveled all over the place looking for medicine—I went to France, I went to Germany to buy medicine, I tried every FDA approved medication. Most of you have done the same thing. Now that I’ve found something that helps my daughter, I need her to have a voice. I need to talk to them. I need everyone to know about it. We need to write. We need to tell the authorities. I don’t have to be afraid anymore.
About a year ago Child Services knocked on my door with two LAPD officers at 10:30 in the evening. That was one of the worst days of our lives. My wife was shaking. The school nurse thought we were neglecting because we were tapering medications. We don’t have to take stuff like this. We already have so much to deal with. Those are some of the reasons that I’m so vocal. Because I’m up to it.
That’s what Realm of Caring is doing. Those guys in Colorado are traveling all across the country talking to the counties and I’m doing that in California. Realm of Caring is gathering data, gathering data on people who are seeing results. How much ratio, when did they take it, what times —and I’m going to do that in California.
I want all California patients to gather data. All California patients who are going to be on the oil. It’s going to be kept private… One of the key things that’s missing is real patient data.
Or if you’re not seeing results, what and why? If you’re part of a group of Facebook or in the Realm of Caring group there are a lot of children who are doing so much better than they were before they were on this medicine. We’re talking about THC and CBD, but we’re talking about Cannabis as an option.
I want to clarify something, I’m not here to say that Charlotte’s Web is the only medicine that works. I’ve never said that. On the contrary, there are a lot of great plants out there. There are some companies that are doing good things and I’m supporting them. I’ve sent many patients to companies that are trying to do it the right way. If you find something that works, ACDC is a great strain. But make sure that it’s grown the right way and that it’s stable and clean. Charlotte’s Web and ACDC are both 20 to 1 (CBD to THC), and if that helps, wonderful… There are more companies coming up in 2014 and I’m happy about that. I wish more companies would come up and pay attention to our children. I and my brothers cannot take care of the entire state of California. So we will support each other and work alongside each other. I will be very happy if that happens
Charlotte is doing great. she went from hundreds of seizures a week to almost no seizures and is medication-free. Zaki I just met in Colorado. He’s doing great. You wouldn’t know that he comes from a past of seizures and problems. He talks, communicates, runs. We were sitting there talking about football and some of the players and I thought if my daughter gets there… it was such an inspiration. Zaki has been seizure free for over a year, a year and three months I think. My daughter is happy and active and doing much better than she was on all those medications.
It’s a work in progress. I can’t wait till this is ready and I can give it to all these children and have all of your succeess stories That will be the best day of my life. And it’s coming soon.
We’re opening a resource center and collective in Los Angeles. It will be called Realm of Caring Health Center. It’s a collective because legally I have to form one to grow for you. I’m trying to build this place to be different. To be a health center. It’s going to offer medicine based on percentage. If they have a condition that requires 5 percent THC to 1 percent CBD. I also want to offer resources —education and support for families and parents who walk in. I want to create a decent, clean medical office where you can sit down and have a medical conversation without smelling marijuana. We’re building this place to be family friendly..
Hopefully it will be one of many that will be open in California, including Northern California. Perhaps 10 a.m. to 9 p.m. So you won’t have to email me and wait. You can call and talk to me anytime you want or come there if you want.
If you have a recommendation, please send it to us so we can be protected. Will be offering different varieties at the resource center. There should be choices and one will hopefully work for you.
The Colorado guys are going around the country trying to get the right to grow it. Someday there won’t be any waiting list.
P.S. March 7 Sanjay Gupta, MD, will narrate another CNN special on medical marijuana Tuesday evening, March 11. Here’s the March 6 media advisory announcing the show, in which Gupta soundbites, “I’m not backing down on medical marijuana. I’m doubling down.” Be there or be in DARE!
