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Family faces hurdles to bring miracle marijuana strain to Florida

Mosleys and StanleyThe parents of RayAnn Moseley, the Pensacola child with intractable epilepsy whose story softened the hearts of reluctant lawmakers, are fighting a new battle: getting Charlotte’s Web to Florida.

The Moseleys have formed a company to apply to be one of the five medical marijuana dispensaries under the new law that allows for the cultivation of marijuana low in THC, the chemical that provides the high, and high in CBD, the one that calms seizures. They say their motives are pure: to guarantee the strain that worked miracles in Colorado is available in Florida and to avoid the risk of having to rely on imitations.

“I’m only ready to try something that’s working and is safe,” said Holley Moseley, mother of RayAnn.

But their efforts face hurdles — and critics.

The Moseleys are partnering with the Stanley Brothers, the family that went from obscure Colorado marijuana farmers to international miracle workers when the mother of Charlotte Figi used the extract of their plants to treat her daughter with intractable epilepsy. That partnership with the Moseleys, if successful, threatens to edge out others who also see business potential in Florida’s new cash crop.

At a hearing to develop the rules for growing, cultivating and dispensing the legal marijuana last week, several cannabis experts and entrepreneurs dismissed the notion that Charlotte’s Web is unique. The testimony was speculative, but presenters said it is one of several high CBD strains that could be developed to treat epilepsy.

“The Stanleys’ claim is, through trial and error, they have come across a strain that is especially effective for intractable epilepsy, but other people are saying the same thing,” said Kerry Herndon, who owns a nursery in Apopka. He said he has been approached by several people, including the Stanleys, who claim to have unique strains high in CBD and want to partner with his nursery. Story here.

Photo: Attending a workshop on marijuana rules last week were Paige Figi, mother of Charlotte who was the first child to use the low-THC strain for her epilepsy, Peyton and Holley Moseley, who have formed a company to bring the strain here, and Joel Stanley, one of the Colorado brothers who developed the "Charlotte's Web" strain. Photo: Courtesy of Ryan Wiggins Courtesy of Caring 4 Florida, the Moseley family non-profit


Read more here: http://www.miamiherald.com/2014/07/12/4232330/family-creates-company-to-bring.html#storylink=cpy

“Who knows? How can you tell?” he said. “Everybody’s got an agenda, and it’s all financial, and it’s stomach-turning.”

Charlotte’s Web is the trademark owned by the Stanley brothers, who became famous last August after a CNN special report by medical reporter Sanjay Gupta featured the 7-year-old Colorado girl, Charlotte Figi. After two years of taking a marijuana extract, she has become nearly seizure-free, and the Stanleys called their low-THC, high-CBD strain “Charlotte’s Web.”

Like many families who heard that story, the Moseleys traveled to Colorado, met Charlotte and the Stanleys, and vowed to find a way to legalize the drug in Florida.

After months of working to see the unimaginable — a bill to legalize a strain of marijuana intended to help their child — the unexpected occurred in the form of a surprise amendment to the marijuana bill. The amendment, which emerged in the final hours of the Legislative session, required that the five dispensaries licensed to grow and sell marijuana be nurseries in Florida for at least 30 years.

The intent was clear: outsiders like the Stanleys were not going to be allowed to set up shop unless they partnered with someone already here.

“They now have to make a deal with the evil growers who manipulated the politics,” Herndon said facetiously.

The Moseleys say they understand that Charlotte’s Web is just one of the high-CBD strains known, but it’s the strain with a track record.

“This has never been about money,” Holley Moseley said. “All along, our goal has been to get Charlotte’s Web for RayAnn, whether that was moving to Colorado or fighting to make it legal here.”

As the parents of a child with an intractable form of epilepsy, there is nothing conventional about Holley and Peyton Moseley’s path through parenthood.

Holley first met RayAnn in a hospital ward in Pensacola, where she was a pediatric nurse. The blue-eyed 2-year-old had cerebral palsy, was in state custody and had been in a non-medical shelter where her treatment needs had been neglected. Her birth mother was a drug user and prostitute. Christmas was approaching, and Holley got permission to have RayAnn join her and her husband for the holidays.

That’s all it took to win their hearts. They hired a lawyer and for three years fought to adopt RayAnn. Their family has since expanded with two natural children.

The Moseleys found themselves fighting for RayAnn again this year when they joined with other families to legalize a strain of marijuana that promises to treat seizures in children with chronic epilepsy.

“Why don’t you just find a way to get the stuff into Florida illegally?” Rep. Matt Gaetz asked Peyton Moseley at a January legislative workshop on legalizing pot that is high in CBD.

“First of all, Florida is our home, but we’re not willing to break the law even to help our daughter,” Peyton answered. “And there are so many parents who are in the same situation. If we leave, that’s one less voice for everybody else who’s suffering.”

Recalling the Moseleys’ story later, Gaetz, a hard-edged Republican from the Panhandle town of Shalimar, got misty-eyed.

“I don’t know many people on the planet Earth who spend three years to adopt a severely ill child and then have such respect for our laws that they are unwilling to break them,” he said.

RayAnn, who is now 11, traveled to the Capitol to win votes for the law, delivering drawings labeled “Rays of Hope” to lawmakers who helped. But when the amendment was added to the bill, the Moseleys realized that if they were going to get Charlotte’s Web to Florida, they were going to have to make it happen.

They created a non-profit organization modeled after the Stanleys’ non-profit Realm of Caring and, because the law does not appear to allow a non-profit to cultivate plants considered illegal under federal law, they created a for-profit limited liability corporation, at the advice of their lawyer, to operate a dispensary. They named it Ray of Hope for Florida.

Under the agreement with the Stanleys, nurseries in Florida will not be able to get the Charlotte’s Web plant unless they receive it from the Moseleys and the Stanleys, said Heather Jackson, executive director of Realm of Caring, the non-profit group that provides assistance to families through education about Charlotte’s Web.

“We generally like to partner with other families because they are so dedicated to it,” Jackson said. “They are going to make the right moral decisions, and they’re always focused on the best interests of the patient. Who else is going to take a call at 8:30 at night to help a patient?”

The model works this way: The nursery licensed to work with the Stanleys cultivates, grows and develops the extract of the low-THC, high-CBD strain of cannabis the Stanleys have developed and refined over the past five years. They use profits from their dispensaries to finance the research and finance Realm of Caring. In Colorado, they charge families five cents a milligram and work closely with the advocates at the non-profit arm to determine dosage and provide assistance.

Realm of Caring has licenses in Colorado and California, with plans to expand their model to other states. Its staff, made up mostly of parents of children receiving treatment from Charlotte’s Web, provides education about how the extract works on a child’s system and potential drug interactions. They help parents determine dosage and provide free and reduced-price access to the extract. They are now serving 434 patients, and thousands more are on the waiting list.

Jackson’s 11-year-old son, Zaki, was the second child treated with the Stanleys’ strain of high CBD marijuana to control epileptic seizures. This month, she said, he has been seizure-free for 21 months. Dosage depends on the child’s weight and diagnosis.

Under the draft rule developed by the Florida Department of Health, there is no guarantee the state will pick the nursery and dispensary that offers Charlotte’s Web. Under the proposal, the five dispensaries, one in each region, will be chosen by lottery. That proposal was roundly criticized not only by growers, entrepreneurs and developers, but even the sponsor of the bill. The department is revising the draft rule.

Meanwhile, Joel Stanley has met with several potential growers and is looking for either “licensing the intellectual property or creating joint ventures between our companies and some of the qualified applicants we have.”

“Which one and how many we’re going to propose to pass this torch in Florida — or whether we’ll try to develop a relationship with all five — will be more clear once the regulations come out,” he said after the rules hearing last week.

Complicating things for the Stanleys is that their oldest brother, Josh, has created his own company, FloriCan, and is working to develop another high-CBD strain apart from Charlotte’s Web.

“He’s been traveling in other countries and working on it with other states,” said Jason Unger, Josh Stanley’s Florida lobbyist.

For the Moseleys, none of these developments change their focus.

“If Charlotte’s Web didn’t make it to Florida, Peyton and I would be moving to Colorado,” Holley said. “From the moment that I met RayAnn, she stole my heart. I’ve been fighting for her since, and this is just another step in the process. It’s all about her. We’ll do what we need to do.”


Read more here: http://www.miamiherald.com/2014/07/12/4232330/family-creates-company-to-bring.html#storylink=cpy

Comments

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Brian Kelly

"Low-THC strain only" seems to be a new trend in prohibitionist propaganda rhetoric.

First off, where did Medical Marijuana prohibitionists get their facts from? Links please? Show us somewhere that says the low-thc strain only is good for all ailments that Medical Marijuana is used to treat.

We'll wait for documented proof/links please, because what prohibitionists are saying is a complete fallacy.

The Medical Marijuana strain low-thc and high in CBD has only recently been discovered and is effective primarily in children with multiple daily seizures.

The low-thc strain is not meant to treat all the other conditions strains with higher levels of thc treat.

Medical Marijuana has been around for over 20 years and has been recognized by over 20 states as medicine, BEFORE the low thc strain was even discovered.

Care to explain that and what follows below away prohibitionists? With proof/links to where they are getting their info that states the low-thc strain is the cure all for every ailment that higher thc strains are used to treat.

We're waiting for that proof and rebuttal.

Furthermore naysayers, please read the excerpt below carefully then respond with your links, proof and rebuttal.

Read carefully:

Charlotte’s story and the concern for other young patients have led some lawmakers to consider passing legislation that only allows patients to access marijuana oils that are high in CBD and that have little or no THC (tetrahydrocannabinol). While it is heartening to see lawmakers’ concern for the plight of patients with catastrophic seizure disorders, these proposals unfortunately exclude the vast majority of those who can benefit from medical marijuana, some of whom also face life-threatening ailments.

Relative Rarity

While CBD appears to be particularly effective at treating seizures, the number of individuals treating seizure disorders through medical marijuana programs is relatively low. For example, only 2% of the registered patients in both Rhode Island and Colorado report seizures as their qualifying conditions. While it is imperative that these individuals be allowed to legally access medical marijuana – and the strain they need – it is just as important to remember that there are tens of thousands of other men and women and a small number of children who suffer from a variety of debilitating conditions whose symptoms are alleviated by medical marijuana. The vast majority of those patients have symptoms that benefit from strains of marijuana that include more than trace amounts of THC.

THC: Why It Matters

Tetrahydrocannabinol, or THC, is just one of the roughly 85 cannabinoids found naturally in marijuana. Clinical trials and the experiences of hundreds of thousands of patients have shown that THC, and strains of marijuana that include THC, provide important medical benefits for individuals suffering from pain, multiple sclerosis, nausea, and wasting disease. THC is also the cannabinoid most responsible for marijuana’s psychoactive effects. While THC does cause marijuana’s “high,” patients use marijuana for relief, not for euphoria. Patients who inhale marijuana can titrate their dosage precisely to use only as much as they need, reducing or eliminating the euphoria. Some use marijuana only before bed.

The federal government has officially recognized THC’s medical properties since 1985, when the FDA approved a prescription drug that is made of synthetic THC — Marinol — for nausea. Yet, Marinol is not adequate for many patients who can benefit from marijuana. For nauseated patients, a pill can be impossible to keep down. Meanwhile, many patients benefit from the synergistic effect of THC and the other cannabinoids, such as CBD. Natural marijuana is less intoxicating than Marinol because patients can titrate their dosage and other cannabinoids moderate THC’s psychoactive properties.

Studies have shown that marijuana that includes THC can alleviate a host of debilitating conditions, including:

Nausea and appetite loss: Researchers have found THC and marijuana with THC are effective anti-emetics and appetite stimulants for individuals suffering from the side effects of cancer chemotherapy or AIDS treatments.
Multiple sclerosis: Research has found that marijuana with THC can alleviate spasticity. In addition, Canada, the U.K., and several other countries approved an oral marijuana extract made of equal proportions of CBD and THC.
Pain: Several studies have found that marijuana strains that include THC can alleviate neuropathic pain — a notoriously difficult-to-treat nerve pain commonly found in amputees, AIDS patients, and patients with multiple sclerosis.
Since the 1970’s, the federal government has been providing a handful of individuals who suffer from various ailments with marijuana grown at the University of Mississippi as part of the Compassionate Investigational New Drug program. The four surviving patients still receiving federal marijuana receive a strain with almost no CBD that has been essential to managing their conditions — a rare bone spur disorder, multiple sclerosis, glaucoma, and a painful condition called nail patella syndrome, respectively. The marijuana these individuals have benefitted from would not be allowed under CBD-only proposals.

Conclusion

Medical marijuana legislation should not be so restrictive as to leave behind around 98% of the individuals who can benefit from it. THC has proven medical benefits and individuals who can benefit from strains that include it should not be forgotten when legislators debate medical marijuana bills.

http://www.mpp.org/assets/documents/low-or-no-thc-high-cbd.html

ed jenkins

The citizens have decided long ago that they do not want these dangerous illegal drugs in their family friendly state where they harm children and lead to worthless lives for adults. These most horrible parents who drug their children rather than properly raising them need to have the child removed from such an abusive situation.

knowa

I can't thank Matt Gaetz for taking the first political risk and it pisses me off that history will remwmber Rick Scott getting credit for marijuana in Florida, how ever their fear of any THC is based on foolish hysteria. Come Nov. 4 these kids will not have to just utilize low THC. And I have heard that there is far more THC in the Stanleys medicine then Florida's.

Bill Thompson

The citizens are outraged and want the scumbag Scott and the legislative leaders arrested and charged for breaking federal drug laws and enabling our innocent children to be drugged with these illegal drugs.

MarvinM

As far as I know, Amendment 2 is still on the FL ballot. It will allow a broader, though arguably not much broader, application of medical marijuana use than what Rick Scott passed.

If knowa is suggesting Rick Scott passed a barely useable medical marijuana bill into law in order to try to, I don't know, use his passing of that bill as some sort of "Hey, it's cool everyone, I passed a medical marijuana bill, you don't need to come out and vote in the general election for Amendment 2, I got your medical marijuana covered", s/he may be right.

The proof of the pudding will come if at any time between now and the November election, Rick Scott puts out an ad (or says at campaign events) that Amendment 2 is not needed because he signed this particular very limited law into effect.

And if we see Scott-sponsered anti-Amendment 2 ads that reference Scott's law and suggest Amendment 2 is not needed because of the law he signed, we will surely know exactly why the Scott campaign is trying to discourage people from voting.

To discourage people from voting.

How wrong is that? A public official should be encouraging voter participation.

Steven Stafford

You have some very good information here. I just joined Kannaway that has hemp oil products myself. I made a review site at http://mindpowerprayer.org feel free to check it out and leave a comment.

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