As outgoing Illinois Governor Pat Quinn prepares to leave office, Mount Prospect resident Maria Rabadan has one more desperate request for the governor from her very ill son – ‘Issue the licenses that will allow medical marijuana to be grown and sold in Illinois.’
Maria’s 9-year-old son, Jancarlo, suffers from a rare form of epilepsy, Dravet Syndrome that has not been successfully treated with approved FDA medicines.
The family is extremely eager to try a cannabis derived treatment option (CBD) but Illinois lawmakers have delayed the medical marijuana program multiple times with no excuses for doing so.
“He has the power in his hands. We ask that he has compassion for the kids.”
Rabadan said towards the Governor. On Friday, Pat Quinn would not say if he would take action on the medical marijuana program before leaving office.
“I want to take every single day I have left. . . . I want to make sure I work as hard the last three days as I did the first three days,” Quinn stated.
While state politicians continue to bicker amongst each other, more and more Illinois families are coming out with their cries for hope.
On Monday Republican Governor Elect Bruce Rauner officially takes office, as the future remains unclear for the Illinois medical marijuana pilot program that expires in 2017.
Photo Credit: SunTimes
As the final days of November wind down, we wanted to make note of this month as National Epilepsy Awareness Month in the United States. Epilepsy affects around 3 million people in the United States alone, with around 65 million suffering from epilepsy worldwide. Every year, around 200,000 individuals are diagnosed with epilepsy. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined.
In recognition of this month, we’ve put together some of the top headlines from this month in epilepsy. From mothers in Chile uniting for access to CBD oil to farmers in Oregon donating precious medicine to sick children, efforts to treat epilepsy with CBD are rapidly expanding. Here’s what this month brought in epilepsy awareness:
Three moms in Florida got together in an effort to advocate for the right and option to utilize cannabis in the care of their critically ill children. The moms were traveling out of state to get the medicine that they need for their sick children and were heavily involved in the effort to legalize medical marijuana in Florida. Though Amendment 2 did not not pass in Florida, the CannaMoms still have access to the life saving CBD oil and will push even harder for medical marijuana in 2016.
Clinical Testing For Cannabis Oil
Three different cities in the United States will soon begin testing cannabis oil in the treatment of Dravet Syndrome, a rare form of epilepsy. Texas Children’s hospital will be among the first to test the cannabis compound Epidiolex. The drug is a purified CBD oil with no psychoactive effects and will be tested on children between 4 and 10 years old who are afflicted by Dravet’s Syndrome. Georgia and Illinois will be hosting future studies.
A worldwide movement? Perhaps. Similar to the CannaMoms of Florida, this group of Chilean Mother’s just put together a group of over 100 moms in order to exchange information about the use of CBD oil in the treatment of epilepsy. Though cultivation of cannabis remains illegal in Chile, these mothers found this treatment to be exponentially more effective than others at 1/8th of the cost.
An Oregon-based grow-op called TJ’s Organic Garden is treating Oregon children free of charge. Pictured above is 8-year-old Forrest Smelser who is one of the organization’s patients. Forrest was suffering from epileptic seizures up to every 15 minutes before he began using the CBD oil. After receiving the cannabis-based CBD pills, Forrest has now gone over 9 weeks without a seizure. TJ’s owner Jim Murphy vows to give out the medicine for free and has enough to supply around 500 patients.
As epilepsy awareness month draws to an end, let’s take time to celebrate the victories in the treatment of epilepsy and remember that there are millions still suffering. More research is on the way, and you can do your part by spreading this valuable information or donating to The Epilepsy Foundation here.
Photo Credit: Enduring Epilepsy
The first FDA-authorized clinical trial for a cannabis therapy medication, Epidiolex, is recruiting children with Dravet Syndrome, a severe form of epilepsy, to test the efficacy of the new drug. Epidiolex is a purified cannabis extract containing only the cannabinoid, Cannabibiol (CBD). It does not contain any amount of the psychoactive cannabinoid, Tetrahydrocannabinol (THC).
The trials, funded by Epidiolex producer, GW Pharmaceuticals, are being hosted by three different children’s hospitals in the United States. The first location is in Texas, center two is in Georgia, and the third is in Illinois. Each location is currently seeking to enroll ten participants between the ages of four and ten years old, for a total of thirty participants nationwide. In each set of ten participants, eight will be treated with Epidiolex, and two participants will be given a placebo instead. This phase of the trial will last for a total of twenty-one days. Out of thirty participants, twenty-four will be treated with one of three different dosage amounts of the CBD medication. The purpose of this phase of the study is to determine the ideal dosage for children suffering from Dravet Syndrome. This phase is anticipated to conclude before the end of the year.
Phase II of this clinical trial will be used to determine the safety and efficacy of long term use, once the appropriate dosage has been determined in Phase I. The second phase will increase participation from thirty to eighty children, and increase duration from three weeks to three months.
Texas Children’s Hospital was selected to be the trial location center in Texas, and Dr. Angus Wilfong, neurologist at the hospital, is the first physician in Texas certified to administer the medication, Epidiolex, to pediatric patients. Dr. Wilfong told KHOU11,
“As one of the largest epilepsy centers in the country, our focus has always been to find new and innovative ways to treat and cure children with various forms of epilepsy. Initial trials of Epidiolex have shown promising signals of efficacy in children with treatment- resistant epilepsy, and we are pleased to have the opportunity to partner with GW Pharmaceuticals in the first worldwide trial for this group of patients with such a catastrophic form of epilepsy.”
One of the patients, enrolled in the trial last week to be treated at Texas Children’s Hospital is six year old, Izaiah Ruiz, pictured below with his grandmother, Lori Fountain. Izaiah has a confirmed case of Dravet Syndrome, and suffers from daily seizures as a result. These daily seizures have caused Izaiah to develop at a much slower pace than other children who do not suffer from epilepsy. Developmentally, Izaiah is only about two years old. His grandmother, Lori, is also hopeful that this CBD medication may improve Izaiah’s quality of life.
She told KHOU11 that she is does not care what other people think about Izaiah’s participation in the study because she would try anything to give him the chance to live the life that most children are able to live, and grow to have a better quality of life as a teenager and eventually a man.
photo credit: Celebstoner, Houston Chronicle