911

XClose

UCL Giving

Home
Menu

The Alviar Cohen Fund: a lifesaving legacy

In 2017, fifteen-year-old Alviar Cohen was one of the 8,500 people to be diagnosed with leukaemia each year in the UK. Now, the funds he raised are contributing to new treatments for future patients.

Photo of Alviar Cohen.

3 February 2023

Initially having suspected a bad bout of food poisoning from an end-of-term visit to a “dodgy” local restaurant, Alviar Cohen visited his GP when a weeks-long illness threatened to intrude upon a family trip to Malta.

However, tests ordered by the doctor showed a notable reduction in his kidney function and – instead of jetting off to sunnier shores – he was immediately referred to Great Ormond Street Hospital (GOSH) for dialysis.

A fortnight on, Alviar was able to return home. But upon being re-admitted to the hospital just weeks later, further tests determined the real cause of his persistent symptoms.

“It’s not food poisoning,” the doctor told Alviar’s father, Adrian. “It’s leukaemia.”

“The bad kind”

Having been moved to the specialist teenage cancer ward at University College London Hospital (UCLH), Alviar underwent what is known as intensive treatment – including chemotherapy and radiotherapy – for his blood cancer.

However, the transition to “long-term maintenance” saw him relapse. This time, Alviar required a bone marrow transplant – his non-identical twin brother Justin proving to be a perfect match.

For ten short months, the donation allowed Alviar to live a near-normal life. But after a second relapse, it became clear that Alviar was in the 10% of patients whose leukaemia is not curable by existing means.

Survival rates for cancers such as leukaemia are at 90% in part because of developments such as CAR-T cell therapies, which sees cells modified so that they can identify and attack the disease for themselves.

Unfortunately, Alviar had a rare form known as T-cell acute lymphoblastic leukaemia (T-ALL) – or as he was known to refer to it, “the bad kind”.

The Alviar Cohen Fund

Even in the later stages of his disease, Alviar was optimistic about the future. He studied extremely hard, passing his A-Levels with flying colours and earning a place to study biomedical sciences at Oxford University.

He and his family were further bolstered by a trial taking place in Singapore which sought to engineer T-cells to treat his cancer type. He was eligible – but participation was to cost £500,000 up front.

Incredibly, his family were able to raise the money online from more than 19,000 individual donors. However, it was sadly too late to save Alviar, who succumbed to his illness in 2021.

Since his passing, the Cohens have re-dedicated the funds remaining from Alviar’s treatment to enable better outcomes for the other 350,000 people each year – and their families – who receive a diagnosis of leukaemia.

Dialling up the fight

To realise their vision, the family revisited their links to UCLH – and the work of Professor Mansour, an Honorary Consultant Haematologist at the hospital and Professor of Haematology at the UCL Cancer Institute and UCL Great Ormond Street Institute of Child Health.

His Leukaemia Biology Research Group at 911 seeks to further our understanding of acute lymphoblastic leukaemia (ALL) and its T-cell subtype. The latter has historically presented a serious issue for clinicians, with no new drug treatments having emerged since 2005.

The 12 talented researchers who form the Group – one of the largest specialist ALL centres in Europe – are determined to better our understand of the biology underpinning T-ALL and use it to develop new treatment options.

"Effective therapies for relapsed T-ALL have been lacking far behind its more common counterpart B-ALL,” says Prof Mansour. “However, we are rapidly expanding our understanding of the disease through research, such as that funded by the generosity of the Cohens.

“There have been some really exciting discoveries in the last few years, so we hope patients will soon have better treatment options than were available to Alviar.”

For the family, the decision to gift £183,000 in unused funds to propel vital research into the cancer sub-type experienced by their brother and son is the powerful opportunity to honour his legacy, as is the poignant prospect of their donation being used in support of early-career researchers.

Shortly after being accepted into university, Alviar had spoken about his own ambitions. “I’ll be studying to help fight diseases,” he wrote. “Perhaps to help give others a chance for a miracle cure.” In inspiring the funds to support his peers, he will be doing just that.

Image

Courtesy of the Cohen family.

԰

UCL Cancer Institute
UCL Leukaemia Biology Research Group
UCL Great Ormond Street Institute of Child Health
UCL Giving