Until last year Barry Lambert was known in Australian business circles chiefly for his success in building Count Financial, a chain of accounting and financial planning shopfronts that he started 35 years ago and eventually sold to the Commonwealth Bank for more than $373 million. That 2011 sale landed him a spot on the BRW Rich 200, where he was ranked the 156th wealthiest Australian last year.

So it was a surprise when Lambert publicly associated himself with the cause of medicinal cannabis. With little warning, he gave a press conference in August at which he announced that he and his family would donate $34 million to the University of Sydney for what is called the Lambert Initiative for Cannabinoid Therapeutics.

Lambert's mind-boggling donation has put him at the crossroads of some of the most difficult issues in health, ethics and business. Suffering families welcomed the boost he has given to research that could benefit thousands, if not millions, of sick people. Police and conservative politicians, however, worry that medicinal cannabis will be a Trojan horse for legalisation of recreational drugs and quack therapies. There are also doctors who will not recommend medicinal cannabis given its still unproven benefits.

Ingrid Scheffer, professor at Melbourne University and the Florey Institute of Neuroscience and Mental Health, is one of them. The world expert in paediatric neurology, to whom the Lamberts turned for advice, says cannabis is potentially beneficial in some cases but has been hyped. "It is not a silver bullet." She says she is not yet able to recommend it because so far there is no hard scientific evidence of its benefits in treating epilepsy, although she is optimistic that proper clinical trials will give an answer in the very near future.

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"It worries me how often I don't get asked about the risks of medicinal cannabis," says Professor Scheffer. "There is good data showing a link between cannabis and psychosis and we know there are people we see through our adult epilepsy program whose epilepsy won't come under control until they stop taking cannabis. We need to weigh up the risks and benefits but I think that medicinal cannabis will have a place in the treatment of epilepsy in the near future."

THE NIGHTMARE STARTS

The Lambert family's journey began in November 2012 when Michael, Lambert's only son, discovered his daughter was sick. Katelyn had seemed a happy, healthy baby until about the age of five months, when her parents found her in bed having vomited and lost control of her bowels. She also had an abnormally rapid heart rate.


After a five-month nightmare of emergency hospital admissions, they were told that Katelyn had Dravet syndrome, a genetic abnormality that affects the brain's electric signalling system and causes blackouts and uncontrollable twitching that can last for hours. The condition leads to some intellectual disability in almost all cases, and often death.

"It's like watching your child being electrocuted to death," says Michael, who lives on a farm on the NSW central coast. He has two older daughters.

Four-year-old Katelyn with (left to right) grandmother Joy, mother Saowalak and father Michael. James Brickwood

Katelyn had started to speak but soon went mute. During one severe episode she was airlifted to the Sydney Children's Hospital in Randwick, where doctors readied defibrillator equipment in case her heart stopped from the stress.

"They were there with the paddles," Joy says. "I wanted to be there in case she died."

For the next year, the Lambert family tried to treat the condition with conventional medicine. Katelyn was admitted tens of times to Gosford Hospital and treated with a cocktail of dangerous drugs such as clonazepam, a depressant similar to valium. At one point, so desperate were doctors to get a large dose into the tiny child that they drilled into her bones. But the seizures kept coming.

It was then that Michael, a computer and horticultural science graduate who had briefly worked at Count with his father, did what many desperate parents do. He asked Dr Google.

"My dad's loaded and I reckon I can get him to fund your research," Michael Lambert told Sydney University's David Allsop (seated) and Iain McGregor. Victoria Baldwin


By chance, the internet was full of a CNN documentary aired in 2013 called Weed. It told the story of Charlotte Figi, a little girl from Colorado with Dravet, whose parents treated her with cannabis. They used a strain of cannabis plant dubbed "Charlotte's Web" supposedly suitable for children. Bred to all but eliminate THC, the component of cannabis that gets you high, Charlotte's Web retains molecules such as cannabidiol, which are believed to have therapeutic effects.

Michael ordered similarly low-THC cannabis online from the US and Europe, where laws are less tight, but the Lamberts still hesitated about using the drug on their little girl.

In August 2014, Michael and Joy attended a conference for Dravet families run by Professor Scheffer. A child with Dravet whose parents attended died during the conference.

Scheffer gave her usual warnings about cannabis and the lack of clear scientific proof but the only thing that registered with Joy was the professor's final words: that sufferers could only improve if the seizures could be stopped.

"I know I am going to jail but if I don't want to see my daughter grow up with half a brain I have no choice," Michael Lambert wrote to Pru Goward, the NSW Minister for Medical Research. James Brickwood

Paradoxically, those words spurred Joy into supporting the use of cannabis. "I thought, 'Bloody hell, she can't keep the seizures away. No one else has been able to keep them away.' I said to Michael, 'We have to do something.' "

At this point there was a terrible echo from the family's past; Barry and Joy had lost a young child in the early years of their marriage.

NADENE'S TRAGIC STORY


One of five children, Barry Lambert grew up on a dairy farm in Bootawa on the mid-north coast of NSW. His mother died when he was 10 and his father, who didn't have a business brain, lost the farm to the banks. Before his mother died, she told Lambert that he would be the one to succeed.

Lambert lodged with a cousin while attending high school in the regional centre of Taree, captained the rugby team and was the only one of his brothers to finish high school. It was here that he met Joy, whose father worked for the railways. They have been together ever since.

Joy trained to be a teacher while Lambert took a job as a teller at the Commonwealth Bank, working in Taree, then a stint at Mount Hagen in PNG, then Coffs Harbour. When he returned, he finished an accounting degree by correspondence. As a side business, he started filling out tax returns for people near his branch on Sydney's north shore. He eventually quit at the age of 36 to start the business that became Count Financial, now just called Count.

Joy taught and then helped in the office, answering the phones and training staff. But she had an extra burden to bear. The second of their three children, a girl called Nadene, was diagnosed with macrocephalia, a rare and little understood condition involving swelling of the head. When Nadene became sick, Lambert convinced the bank to transfer him to Sydney to be closer to her doctors.

After a long struggle, Nadene died at only two years of age. Joy fought the illness to the end at a time when Barry was very busy with his business life. "You don't forget that. It's like a war," she says. A few years after this tragedy, they adopted their fourth child, Emma.

When her granddaughter was diagnosed with Dravet, the story of Nadene came flooding back. Lambert, Joy recalls, took it fatalistically. "All he could say was, 'It is as it is. There is nothing we can do.' "

Joy had a different attitude. She did not want her son to go through what she had been through. "There is always something we can do," she told her husband.

Thus she joined her son in researching medicinal cannabis. Then, despite the lukewarm response from Professor Scheffer, she encouraged Michael to give cannabis to Katelyn.


"We were the heart of this and Barry the calculator," she says simply. Lambert nods in agreement.

By coincidence, when Michael returned from the conference at which Scheffer said she could not recommend the use of cannabis, the first consignment of cannabis oil was waiting for him at the post office. He had imported it from a firm called Endoca in Denmark, where medicinal cannabis is legal.

A few days later, he started the treatment.

There was a lot of trial and error. Without any recognised medical evidence Endoca is prohibited by Danish law from making any health claims, or even suggesting a dosage.

The Lamberts believe that as soon as Katelyn took the cannabis she started to improve. The seizures have become less frequent and, crucially, much shorter, although she has had one significant seizure since. Katelyn was able to go to preschool and started using more words. "She is a person now. She is well," Michael says.

NOT JUST FOR 'STUPID HIPPIES'

In November 2014, just two months after Katelyn started to improve, Professors Iain McGregor and Dave Allsop, two pharmacologists from the University of Sydney, answered a call to attend a conference on medicinal cannabis in Tamworth. McGregor says no other university faculty bothered sending anyone to the Tamworth event. "They thought it was just for stupid hippies," he says.

McGregor and Allsop had spent two decades conducting cannabis research. For all that time they could only get funding to study its dangers; no one had offered to fund the testing of its benefits.


NSW Premier Mike Baird addressed the Tamworth conference and announced that he wanted to make NSW the world leader in medicinal cannabis research. It was a watershed moment in the politics of cannabis in Australia.

For McGregor and Allsop, it had a more direct significance. Allsop found himself at a table during a conference dinner with a man dressed like a central coast farmer. He'd seen him walking around brandishing a tube of what Allsop recognised as illegal Endoca medicinal cannabis. It was Michael.

The pair hit it off at the dinner, talking about cannabis and their shared passion for dirt-bike riding. That seemed like it, but two days later, back in his Sydney office, Allsop received a call. "My dad's loaded and I reckon I can get him to fund your research," Michael said without much ado. "I reckon he might give you five or six million." Allsop thought it was a crank call. Then he googled Barry Lambert and realised it was legit.

This was where Lambert came into his own, arranging the structure of the donation. Barry and Michael Lambert held a series of meetings with Allsop, McGregor and Sydney University's philanthropy team.

The Lamberts decided to up the ante and instead of the $6 million their son had suggested they ended up contributing $34 million. Medicinal cannabis was a cause they liked on many levels, not just because of their granddaughter.

"The ills of the world are going to be cured by science rather than governments handing out money," Lambert says. "I'm a great believer that if you just give money to buy a wheelchair, you aren't solving the big problems of the world."

And he liked the idea that he could help break a taboo, although he himself has not been involved in anything illegal. "It's about doing the right thing. There are all these uses for cannabis but, because it's illegal, it's never been researched. Sydney Uni was putting its neck on the line."

Ever the businessman with a rural background, Lambert is also hoping to kick-start a local industry growing low-THC cannabis for medicinal use but also for its fibre and edible seeds. To this end he has invested in a company called Ecofibre. He's travelled to Kentucky in the US to view fields already growing it for the US market, where medicinal cannabis is legal in 23 states. Ecofibre grows hemp for fibre in NSW in a licensed location but cannot sell it for medicinal use or food.


John Brogden, the former chief executive of the Financial Services Council, worked closely with Lambert at Count on regulatory issues. He knew Lambert was generous because his $16 million family charitable trust regularly gave to Lifeline, the charity Brogden chairs.

But Brogden says Lambert's game-changing donation to such a controversial cause drove home the multimillionaire's original bent of mind.

"There's no doubt that personal connections drew him to a cause which is unusual for a bloke who has probably never smoked a joint," Brogden says. "That shows just how open-minded he is to new ideas and new approaches."

When Brogden heard about Lambert's donation, he emailed to congratulate him but also to suggest he ensure the money was spent well and not just sunk into a trophy university building with his name on it.

Lambert emailed back: "No bloody buildings."

HOW CANNABIS CAN HELP

The molecules in cannabis are an intriguing new field for microbiologists. Scientists identified THC in 1964 and then the chemical receptor activated by THC. That receptor led them to a whole category of non-cannabis brain hormones called endo-cannabinoids that operate in the same way.

The interesting property of all these endo-cannabinoids, including those in cannabis, is that after a charge has leapt across the synapse gap between two nerves they send a signal back in the opposite direction. This reverse charge can turn the current off.


There are hopes that many of the 120 cannabis molecules which have barely been studied could be used to treat a wide range of conditions where regulating an electrical charge is important. The Lambert Initiative has been established with a wide mission to investigate a range of possible applications: epilepsy; stimulating appetite in chemotherapy patients; tremors from multiple sclerosis; pain relief for the terminally ill; treatment of addiction and post-traumatic stress disorder.

McGregor hopes that within 10 years he will have developed at least three patented drugs, backed up by high-standard double-blind trials which will convince regulators and doctors to approve their use. One factor that he thinks should work in his favour is he will not have to worry too much about side effects, which are a big problem for most pharmaceutical tests. For cannabis, by contrast, the dangers are well understood and known to be limited. "It is a one in 1000 game testing potential drugs but we think we have a good chance," he says.

Not all pot smokers are happy about the Lambert Initiative. Many say medical trials delay full legalisation of cannabis. Others fear, with good reason, that to avoid prosecution they will have to pay thousands of dollars for patented drugs which are virtually the same as home-grown pot. Lucy Haslam, a Tamworth nurse who leads the national campaign for medicinal cannabis after her terminally ill son Dan used it to control pain in his last days, has joined the board of the Lambert Initiative. The driving force behind the 2014 Tamworth conference, she says she gets a lot of flak on social media from the "Free the Weed" hippy crowd who think it is a waste of time to develop scientifically verified and patentable versions of cannabis.

"There are hippies who think there should be a pot plant on every window sill," Haslam says. "They say the Lambert Initiative is just like Big Pharma."

CATCH-22 OF LAWS

Despite all the publicity around medicinal cannabis in Australia, including the passage of a federal law laying out a pathway to legalise the cultivation of medicinal cannabis, it is still illegal in most states to use it or grow it. The patchwork of laws creates a catch-22 that drives people like Michael Lambert to distraction. He has recently received approval from the Therapeutic Goods Administration to import cannabis oil under a special access regime but under state law possession and use is still illegal.

Michael went to Gosford Police station in early 2015 to tell the duty sergeant that he was giving his daughter cannabis oil and did not want to hide it any longer. He burst into tears while making his speech. Police visited his property soon after and demanded he hand over the Endoca but took no further action.

Then Michael wrote to a dozen MPs demanding a system of compassionate access to medicinal cannabis. One of them was Pru Goward, the NSW Minister for Medical Research.


"HELP HELP HELP (my daughter doesn't speak much but she can say HELP)," he wrote to the Minister. "Children like my daughter desperately need your help. I know I am going to jail but if I don't want to see my daughter grow up with half a brain I have no choice." He attached a tiny sample of cannabis.

Ms Goward reported Michael to police. When asked for a comment, she said through a spokeswoman: "We do not want patients or their families having to play pharmacist."

In the meantime, the debate goes on in the Lamberts' living room about exactly how much good the Endoca oil is doing Katelyn. She went to preschool last year after a long period without seizures. But then she caught a cold. Weakened by a fever she had another fit, a relatively light one but still a setback in her development. She has been seizure-free since and is back at preschool.

The NSW government has announced an Australian trial for children for the patented cannabis-based epilepsy treatment Epidiolex, made by the British giant GW Pharmaceuticals. GW has just announced that in a phase-three trial in the US, Epidiolex reduced seizures in 39 per cent of cases, against 13 per cent for a placebo. Katelyn would not be eligible for the trial as she is already taking cannabis, nor will the results from the Lambert Initiative benefit her anytime soon. But the early signs are positive.

As the interview with the Lambert family comes to an end, after a long time dozing on her mother, Katelyn wakes up and looks at us with bright eyes. For the last half-hour of the chat she observes me closely. As I stand to leave, Michael leaps up and urges her to do something to demonstrate her improved mental faculties.

A burly man with stubble and a tuneless dad's voice, Michael starts singing I'm a Little Teapot, cocking his arm to illustrate the teapot. Everyone in the room silently urges Katelyn to join in, but she doesn't move.

I pick up my things and stop at the door to say a final good-bye. There's a stirring at the dinner table. Katelyn, now cheekily animated, slides off her mother's lap, runs across the room and as I stoop wraps her arms around my neck, just like any healthy little girl might do.

The room as one breaks into a smile, lit with hope.

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