‘Benjamin didn’t want other people to suffer like he had’

“He had a real interest in researching as a medic-in-waiting ways in which CF could eventually be cured in the future, and also, through things like genetic testing, how it could be prevented altogether. Supporting Jnetics in its work and developing the testing capability was the most obvious thing to do in Benjamin’s name.”

Jnetics, whose chair Anthony Angel is Benjamin’s father, was set up in 2010 as JGD UK, changing its name to Jnetics in 2015. It tests for 49 recessive disorders which are more commonly found in the Jewish population. These include cystic fibrosis.

According to the charity, people of Jewish ancestry have a one in three chance of being a carrier of one of the recessive genetic disorders Jnetics tests for. If both partners are carriers, there is a one in four chance that their child will inherit the condition. Screening for recessive disorders allows couples to explore preventative options, such as prenatal diagnostic tests or preimplantation genetic testing.

Benjamin Angel, who died at 26 from complications arising from cystic fibrosis (Photo: courtesy)[Missing Credit]

Reflecting on the time since his brother’s death, Jonny told the guests at the breakfast: “Twenty-one years heartache, missed birthdays, family celebrations, milestones and everything else in between. Twenty-one years of a life that should have been lived but wasn’t.

“Benjamin died at just 26 years of age, a tragedy no family should never have to face. What makes this loss even harder to bear is knowing that today, through the work of Jnetics, it would have been preventable.”

Growing up with a brother with a life-threatening medical condition, Jonny said: “I’ve seen how unbelievably hard it was for my parents, how much angst there was, how stressful it was, how much worry there was on a day-to-day basis and how, essentially, it took over every part of our lives.”

Recalling the day his brother died, Jonny said: “I got a call – I was in the pub with friends – and it was my aunty saying something terrible had happened and I needed to come to the hospital.

"I knew what had happened before I saw him. I remember walking through the belly of the hospital, going through all these long corridors, and when I got there, I saw my sister-in-law in floods of tears, and Benjamin was lying there.”

Jonny Angel speaking at the Jnetics business breakfast (Photo: Paul Lang)[Missing Credit]

His parents were away at the time, and Jonny was faced with the horrendous task of calling them to break the news. “I don’t think that I’ll ever have to, please God, do anything as harrowing as that in my life again.”

He described his Benjamin as “an incredible person”, adding: “I think the fact that he knew his life was going to be shortened meant that he did everything he possibly could to get the absolute most out of life. He was just an incredibly inspiring person, an amazing big brother to have, and it made it all the more painful to lose him.”

His brother’s illness meant that Jonny and his wife, Elisa, got tested to find out if they were carriers before embarking on a family. Jonny was found to be a carrier, but his wife wasn’t. She said: “It really was a huge relief. I was incredibly emotional when we found out that I was negative. We’ve got three beautiful healthy girls. We feel very blessed.”

With one parent who is a carrier of cystic fibrosis carrier, the children have a 50 per cent chance of being carriers themselves.

Elisa said: “Knowledge is power, so we are in a position when we know that, come a certain age, [our daughters] will be getting tested as well, not just for cystic fibrosis, but for all the other genetic diseases that Jnetics tests for. We’re all lucky that we have this in our community.”

Jnetics chair Anthony Angel (Photo: Paul Lang)[Missing Credit]

Jnetics currently runs testing programmes for free in Jewish schools and on campus and subsidised testing for couples. (The NHS Jewish BRCA Testing Programme, which Jnetics promotes, along with Chai Cancer Care, involves a separate test.)

Applauding its work, Jonny said: “Jnetics is an astonishing charity. The work that they do is literally saving lives in our community, and I can’t think of a better legacy for my brother than a charity which is preventing people from having children with tragic, life-shortening diseases like my brother had.”

He said that only last week, the charity had identified a couple where both partners were carriers of Tay-Sachs, a debilitating genetic disease, whereby sufferers usually don’t live beyond the age of five. “Because of that test, they can now plan for a family, free from the risk of having a child with a devastating disease.”

CEO of Jnetics Nicole Gordon (Photo: Paul Lang)[Missing Credit]

Other speakers at the Decoding the Future breakfast were Gil Bar-Nahum, managing director and EMEA head of biotechnology at Jefferies International, who talked about how advances in genetics, AI, and biotechnology were transforming healthcare, and broadcaster and writer Vivienne Parry, who gave an insight into how rapidly genomic medicine had progressed in recent years.

Nicole Gordon, CEO of Jnetics, said afterwards: “The funds raised will be used to ensure that genetic testing continues to be accessible for so many families, helping to prevent the heartbreak of having a child affected by a devastating genetic disorder.”

Jnetics.org

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