Multimillionaire Barry Lambert tells 60 Minutes Australia why his family decided to give 4-year-old Dravet Syndrome sufferer Katelyn cannabis oil.
On Sunday 11th September on primetime Australian television series 60 Minutes, Australian family the Lamberts shared their emotional story of struggling to cope with little Katelyn’s uncontrollable, daily seizures due to a rare and potentially fatal genetic condition, Dravet Syndrome. And how since giving her hemp based CBD oil, she has been seizure free for a year.
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Barry Lambert 60 Minutes Australia
Last month Endoca got to meet them in person. Here’s their story.
Barry and Joy Lambert look like any other proud grandparents. Their down to earth charm is infectious as they talk animatedly about their family back home.
Back home as it happens is several thousands of miles across the globe in Sydney, Australia. But today they’re spending time telling their story to Henry Vincenty, CEO of Endoca while visiting the Hemp fields in Denmark.
And boy, do they have a story to tell. The Lamberts you see are are an extraordinary family, despite their best efforts to say otherwise.
‘We were lucky enough to have worked hard’, says grandmother Joy ‘and Barry had a good business brain and we ended up with a bit of money’.
A bit of money is an understatement. Barry Lambert, 70, who came from extremely humble origins growing up on a dairy farm in Bootawa, New South Wales, was estimated in 2011 to be worth $373 million when he sold the company he founded Count Financial, to the Commonwealth Bank.
But it’s not the Lamberts’ wealth that has recently thrust them into the limelight, but their unprecedented altruism in donating $34 million to Sydney University for research into medical cannabis.
Six month old Katelyn goes from normal child to hundreds of seizures a day
The Lamberts, who had never even smoked a joint in their lives, were alerted to the plant’s healing potential due to the rare illness of their granddaughter Katelyn. A perfectly healthy child until six months, Katelyn suddenly began to have hundreds of violent seizures a day and was soon diagnosed with Dravet Syndrome, a rare genetic disorder. Children suffering with Dravet Syndrome face a life on heavy medication in order to control the blackouts and fitting that can last for hours. The condition leads to some intellectual disability in almost all cases, and often death.
In Katelyn’s case, she was having up to 1400 fits a day and despite doctors’ best efforts to reduce the number through medication, the child’s condition showed no signs of improvement and her future looked bleak.
After a particularly harrowing two-and-a-half-hour seizure that saw Katelyn helicoptered to a specialist hospital, the family decided to look for alternative treatments. And before long Katelynn’s father Michael came across the CNN documentary about fellow Dravet sufferer Charlotte Figi, who after taking high CBD/ low THC cannabis oil, had experienced an almost miraculous improvement in her condition.
In desperation the family turn to CBD oil and see the benefits immediately
Retired businessman Barry continues, ‘that’s how we got involved with it and our son tracked down Endoca and that was the first cannabis related medicine she had’.
As soon as Katelyn started taking the Endoca 20% CBD Extract Raw Hemp Oil the family noticed a change in the little girl. Two years on and she hasn’t had a seizure in a year. Smiling, Joy says, ‘that is miraculous for Dravet syndrome. It is untreatable by normal medicines’.
‘I’ve seen such a difference in Katelyn since she’s been on the CBD’ she goes on. ‘She’s happier, she’s more alert, she goes to preschool. We don’t fear when she’s there that she’ll have six seizures through that day, so we’re very happy with that. It’s a little step, but we’ve got to be grateful for that. She’s alive’.
For the Lamberts, Katelyn’s dramatic reduction in seizures brought up a far bigger question: how could something so therapeutically powerful be considered illegal?
Until recently the legal position of medical cannabis in Australia had been complicated by contradictions between federal and state law. However, November will see the legalisation of medical cannabis throughout the country whereby it will be available on prescription for specific medical conditions.
But prior to this, the Lamberts were forced to break the law by importing Endoca hemp based CBD products from Denmark to give to Katelyn.
‘It’s just not right,’ Joy says in frustration. ‘The legal way of doing it is giving her drugs that are very strong, giving her 4 at one time, there are children who are given 8 and they still don’t stop the seizures. So you tell me which is the best: import some CBD from Denmark and she stops having seizures or continuing on in the same old, same old way. I say “if nothing changes, nothing changes” and that’s something I stand by. So we’re trying to make changes’.
A need for research prompts massive donation
The Lamberts soon realised that a huge stumbling block in the legalisation of medical cannabis is the lack of conclusive research and clinical trials.
‘It’s all about education and research,’ Barry continues. ‘Doctors are scientifically driven. They need to see scientific evidence that needs to be approved by various medical bodies. That’s the reason we’re supporting the formal, legal, scientific research at Sydney University’.
It was the Lamberts’ son Michael, Katelyn’s father, who got the ball rolling after meeting two professors of pharmacology from Sydney University at a medical cannabis conference in Tamworth, New South Wales. An initial promise of $6 million was increased beyond the university’s wildest dreams to $34 million and has given birth to the Lambert Initiative for Cannabinoid Therapeutics.
Not just for epilepsy
The family were clear that they didn’t want the donation to only fund research into treatment for Katelyn’s illness.
‘Now there is a lot of anecdotal evidence around the world for the benefits of CBD for kids with seizures but there also possible benefits for a whole range of diseases and that’s what the research is aimed at, not just epilepsy’ says Barry. ‘So hopefully before long we’ll hear how cannabinoids from medical cannabis can assist a range of medical conditions’.
One year on since the launch of the initiative, Barry knows that the family’s donation could be a game changer in both the development of cannabinoid based medicine and the plant’s legal status.
‘I think there’s a lot riding on this Sydney University research. And hopefully the scientists will prove what companies like Endoca know and believe to be true beyond doubt. I think the cannabis plant will be proven to be the wonder plant of this century. I know it’s been around for previous centuries, but I think scientists will discover what a wonderful plant it is and it will be of great benefit to mankind’.