Fred Vogelstein's son Sam suffered from severe epilepsy. After trying numerous unsuccessful treatments, Vogelstein's wife found an article about a CBD-based treatment in London that significantly reduced Sam's seizures. Vogelstein then faced regulatory hurdles bringing the treatment back to the US. He wrote an article for Wired chronicling his family's journey to raise awareness about medical cannabis research. Vogelstein believes the debate needs to focus more on the scientific research and potential medical benefits of cannabis, rather than recreational use. If research is restricted due to current laws classifying cannabis as a Schedule I drug, people may be deprived of potential medical cures.

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Navigating the cannabis maze: a family in search of cure
By Jody McNannay
Despite a long history (see related Cannabis’ 5000-year History article) of being used to treat a broad array of
maladies, cannabis, particularly in the U.S., continues to spark heated debate. This debate is all the more complex
given the fact that it is being explored on two fronts. On the one hand, scientists at leading research centers across
the U.S. are involved in cannabis-based medical research involving treatments and cures for everything from cancer
and epilepsy to Multiple Sclerosis (M.S.) and Parkinson’s; simultaneously, citizens in four states—including Oregon
and Washington—recently succeeded in legalizing marijuana for recreational use.
“What’s interesting in the U.S. medical cannabis conversation right now is that it’s essentially become
indistinguishable from the recreational conversation.”
Fred Vogelstein, author, contributing editor Wired Magazine
“What’s interesting in the U.S. medical cannabis conversation right now is that it’s essentially become
indistinguishable from the recreational conversation,” observed Fred Vogelstein. As a contributing editor for Wired
Magazine, the cannabis discussion is more than just another interesting article. It’s become personal for Vogelstein,
whose story of his son’s battle with epilepsy and the long road to discover a cannabis-based treatment was
chronicled in the July 2015 issue of Wired magazine, “Boy Interrupted.”
After trying every drug and diet, reading thousands of scientific papers and spending thousands of dollars searching
for a treatment for his son’s epilepsy, Vogelstein’s wife, Evelyn, uncovered an article that would eventually prompt a
journey to London. Following a great deal of research and planning, the Vogelstein’s son, Sam, was placed in a one-
patient experiment. Vogelstein explains, “Doctors there can get promising medications for their patients from the
manufacturer to be used under their direct responsibility. It’s known as administering on a named-patient basis.”
Under this program, researchers at GW Pharma, who had been developing a drug for epilepsy, were able to work
with Sam to test their cannabidiol-based (CBD) treatment.
The results were unbelievable. As Vogelstein wrote in his article, “Eight days after Sam’s first pill, it was obvious that
we were witnessing something fantastic.” In the space of eight days, Sam’s seizures had dropped from 68 to 3. There
was only one problem. Sam had to return to the States, and the CBD had to remain in England. In the months that
followed, Fred and Evelyn navigated a labyrinthine maze of regulatory bureaucracy involving the Food and Drug
Administration (who ultimately approved use of the drug on a compassionate-use basis), the Drug Enforcement
Administration, consultant fees, government forms, Sam’s doctors and a general “To Do” list that would have brought
weaker souls to tears.
“People talk about cannabis in the wrong way. What’s most important is to change how we talk about it. It’s time to
figure out how to look at the discussion from a scientific perspective and put everything else aside.”
Fred Vogelstein, author, contributing editor Wired Magazine

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Known for his reporting on business and technology—writing for Fortune magazine, US News & World Report and
the Wall Street Journal and authoring the book “Dogfight: How Apple and Google Went to War and Started a
Revolution,” Vogelstein admits the decision to “go public” with the story was not one he took lightly.
Initially uncertain whether the decision was in the best interest of his son or his family, Vogelstein explained, “I have a
clear idea, as a longtime journalist, what it takes to open yourself up in that way. You learn to be prepared to think
about what that entails.” His family, however, had other ideas. “They impressed upon me how few people are in a
position to promote this conversation.”
From the beginning, Vogelstein knew that he wanted to keep his message simple. “People talk about cannabis in the
wrong way. What’s most important is to change how we talk about it. It’s time to figure out how to look at the
discussion from a scientific perspective and put everything else aside.”
Despite his goal, the U.S. public remains hesitant to separate medical cannabis research from the recreational
marijuana debate. As Vogelstein observes, “The introduction of medical marijuana had some positive effects for
recreational users because it gave at least a little credibility to their cause. The exact opposite is true for the
researchers, however, as a large number of ‘so-called’ medical marijuana users were still primarily interested in
getting high.”
Serious consideration of marijuana as a breakthrough medical compound is a challenge. With names like names like
“Maui Waui,” “Blueberry Yum Yum” and “Amnesia,” all listed on the Medical Marijuana Strains website, and likely
found at the local medical marijuana dispensary, “It’s hard to enter one of those stores without thinking of Fast Times
at Ridgemont High,” observes Vogelstein.
“We need to figure out a way for researchers to better understand what cannabis is…and what cannabis isn’t … If we
don’t do this, we’re depriving people of the opportunity for medical cures.”
Fred Vogelstein, author, contributing editor Wired Magazine
Many believe the “golden age of medicine” is a thing of the past. During that nebulous period, sometime between the
end of the 19th century and the 1970s, amazing medical advances were made. From the identification of microbes
and the development of the therapeutic measures necessary to destroy them to the “conquest” of epidemic infectious
disease, the discoveries made during this period enabled physicians to save lives. In turn, this prompted the influx of
previously unimagined funds, both public and private, to further enhance medical discovery and care.
Today, as politicians, government agencies and insurance providers wrangle over the cost of health care, it’s hard to
imagine a “golden age.” Yet, Fred Vogelstein can’t help asking, “What if?”
“We need to figure out a way for researchers to better understand what cannabis is…and what cannabis isn’t … If we
don’t do this, we’re depriving people of the opportunity for medical cures.”
Fred Vogelstein, author, contributing editor Wired Magazine
“What if one of the most important natural medical compounds in history has been hiding in plain sight for 70 years?
What does that say?” Indeed, the so-called “golden age of medicine” coincided with the decision to classify cannabis
as a Schedule I agent—“a drug with no known medical use”—during the same period when penicillin was being
developed. Is it possible we might just be on the precipice of the next “golden age?”
In his article, Fred writes about the Epidiolex, the name GW chose for the drug Sam tested. “Epidiolex is not a miracle
cure. The most recent data, out in April 2015, shows that of 137 kids who tried it for 12 weeks, it helped about half,
reducing their seizures by at least 50 percent, with 9 percent becoming seizure-free. This is a better response rate
than it sounds. All of the patients in the trials are those like Sam who had already run out of conventional
options.” While CBD-based Epidiolex did not work for everyone in the study, there were 12 kids who ended up
seizure-free. While Fred’s story reminds us that either CBD nor Epidiolex will help everyone, this writer suspects that
for many of the kids and their families, Epidiolex might just be a miracle.
Note: Fred Vogelstein will be speaking as both the afternoon keynote on Day Two of the Oregon Bio Annual
Conference and again at the Dinner later that night. We hope you will join us in welcoming Fred and take the
opportunity to thank him for sharing his story.

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Jody McNannay is an experienced business communication advocate. Whether writing, editing, photogr aphing or
event planning, Jody focuses on creating clear, compelling content that brings together the message, the medium
and the audience. Whether the final product is a strategic plan, news release, marketing collateral, technical
publication or an entire event, Jody works with clients to maximize the impact of the strategy behind the message.
Previous clients include the Northwest Food Processors Association, Oregon Episcopal School, the American
Hanoverian Society and a variety of software organizations. Contact Jody at mailto:jmcnannay@gmail.com