The grandparents of three-year-old girl with a rare form of epilepsy have made a $33.7m donation to the University of Sydney to fund medicinal cannabis research.

Announcing their donation at the university on Friday, Barry and Joy Lambert said international research suggested their granddaughter Katelyn, who suffers hundreds of seizures each day, may benefit from medicinal cannabis treatment.

A meeting with researchers at the university to discuss Katelyn’s condition, known as Dravet syndrome, led her family to believe that more detailed research needed to be carried out, Barry Lambert said.

“Not only for the possible benefit of children with childhood epilepsy, like our Katelyn, but also for its potential benefits for a wide range of other conditions that may benefit from extensive research into the cannabis plant,” he said.

“The experience of our granddaughter … has opened our eyes to the extraordinary possibility of cannabinoids treating not only her condition but a range of chronic illnesses that don’t often respond to conventional treatments.”

Barry Lambert, grandfather of Katelyn Lambert, speaks at the University of Sydney on Friday. Photograph: Joel Carrett/AAP

Dravet syndrome begins in childhood and places sufferers at a higher risk of sudden death. Treatment options are poor and many with the condition suffer difficulties with speech, delayed growth, movement and balance. The syndrome is not as responsive as other types of epilepsy to conventional treatments.

A US-led study published in April that examined 75 child epilepsy sufferers found that of those with Dravet syndrome, 23% responded to treatment with oral cannabis extracts. The authors concluded there was a need for larger and more rigorous studies to evaluate the efficacy and safety of the treatment for paediatric epilepsies, but found it was well tolerated in their sample.

The donation will go towards the university’s “Lambert initiative” for clinical and scientific cannabinoid-related research, in the hope of ultimately producing cannabinoid-based medicines.

In December, the New South Wales government announced that it would sponsor clinical trials for the substance, and in March, Queensland and Victoria said they would hold similar trials.



The NSW premier, Mike Baird, said the donation from the Lamberts would give that state a reputation for being at the forefront of research in the field.

“NSW is breaking new ground in terms of medical cannabis research and this major investment confirms our state’s leadership in this area,” Baird said.

“The Lamberts’ investment gives our cause enormous momentum, and my hope is it dramatically increases the cross-sector knowledge sharing required to ultimately produce cannabinoid-based medicines that are safe, reliable and affordable.”

A priority of the Lambert initiative will be to examine how cannabidiol, a non-intoxicating compound in cannabis, works to treat paediatric epilepsy, and to explore whether other compounds identified as having the most potential can treat the condition.

The Lamberts’ donation is one of the largest made by the public to medical research. In August, Queensland property developer Clive Berghofer donated $50.1m to the Queensland Institute of Medical Research, the largest single philanthropic donation from an Australian.