For Patricia Durão, the first sign that there was something wrong with her daughter was when she stopped being able to walk at fifteen months and her progress went into reverse. Amélie died at the age of eight. There had been no inkling from Patricia’s own family in Portugal that they might be Tay Sachs carriers. Her husband Daniel’s father had been a refugee from Poland who moved away from the Jewish community on arriving in the UK, and married out.
“It’s a very common story,” says Patricia who now runs CATs, a support and research charity. She says that nowadays very few of the cases she encounters are from Jewish families because awareness is so high within the community due to the educational work done by Jnetics and others. People who have drifted away from the faith can be more at risk because they don’t realise that they may be carriers.
Gidon Schwartz urges students to get tested and encourage friends to do likewise. Anybody who has one Jewish grandparent is eligible for the screening which involves a zoom consultation and a self-administered cheek swab.
“Whilst for many students, children and family planning will be the last thing on their minds, it is never too early to take a test that will give you the knowledge and power to ensure you have the best chance of a healthy family when you decide the time is right for you.” Though you can get subsidised screening at any time, only students are tested free. Booking opens at the end of September and testing takes place in November.
https://www.jnetics.org/
https://cats-foundation.org/
The war on Parkinsons needs YOU!
Mascha Nachmansson survived the Lodz ghetto, Auschwitz and Ravensbruck, rescued to Sweden where she eventually found lasting happiness in marriage. But the strength and resilience she’d shown in the face of Nazi brutality was tested to the hilt when in her seventies she was diagnosed with Parkinson’s.
“She didn’t have a tremor, but terrible rigidity made everything very difficult,” recalls daughter Jeanette Marx. Mascha accepted help with daily tasks such as dressing and washing herself, but when it came to the need for incontinence pads, she became very self-conscious. “All of us want to preserve our dignity”, says Marx. “And that was, I think, what she was concerned about. She was a very dignified lady, intellectual and sociable, and proud of her appearance.”
The experience of caring for Mascha until her death in 2012 and her own understanding of the value of scientific research prompted 75 year old Marx to volunteer as a guinea pig for a study into inherited Parkinson’s. Most cases of the disease occur randomly, but there is an inherited strain linked to a fault on the gene LRRK2 (pronounced ‘Lark 2’), also associated with Crohn’s disease, which is more common in people with Ashkenazi heritage and Berbers from North Africa.
Dr John Hall of London University’s Institute of Neurology says, ‘Not everybody who has the LRRK2 mutation will go on to get Parkinson’s but their chances are increased.” Google co-founder Sergei Brin announced in 2018 that he has tested positive for the mutation.
Dr Hall says the aim of the research is to understand the disease mechanisms, with the ultimate goal of allowing early diagnosis and treatment. He hopes that in the future it will be possible to prevent people ever becoming ill with the disease. already Parkinson’s can already be detected up to seven years before symptoms appear.
But Dr Hall says that since the project started two years ago, it has struggled to recruit enough volunteers, which is “frustrating’. Roughly fifteen per cent of Parkinson’s sufferers of Ashkenazi heritage are LRRK2 carriers, so he’s appealing directly to anybody with more than one case of the disease in their immediate family to come forward to help fight the disease which TV presenter Jeremy Paxman said “makes you wish you hadn’t been born”.
In the absence of preventative treatment right now, Dr Hall recognises that not everybody will want to know whether they carry the gene mutation : “It's an important part of the research that no one needs to know the result. Because it's just for the benefit of the researchers.” Contact: john.d.hall@ucl.ac.uk
Do your health a big fava!
Green nuggets: broad beans are nutritious and enhance your mood[Missing Credit]
When it comes to health, haimishe cuisine gets the red card: all that schmaltz, cream cheese and processed meat. Even the fish is fried, bathed in mayonnaise or doused in salt.
For those who have long suspected that Sephardi and Mizrachi food is lighter on the waist and heart, confirmation came along this month. Newspapers reported that Cambridge researcher Nadia Mohd-Radzman is campaigning for the broad bean, which she says isn’t just rich in protein, fibre and iron but also has mood enhancing qualities.
Nu? You might ask, what’s so Jewish about that? You have to go beyond the headlines about British broad beans to realise that the vicia faba she mentions is also known as the fava bean, which in its dried form is found in many Middle Eastern specialities including ful mesdames, the national dish of Egypt, hugely popular amongst Mizrachi Jews.
Doyenne of Jewish cookery writers Claudia Roden wasn’t in the least bit surprised to hear of the beloved bean’s nutritional and mood improving qualities.
“In Egypt, full medammes with hamine eggs (boiled for 10 hours) accompanied by salads was the cheap Sabbath lunchtime meal in Jewish families that were large, modest and hospitable” she recalls. My father called it a tfadalou dish, meaning ‘welcome’.
“Broad beans are important in the cooking of Mizrahi Jews generally.
In my family we cooked fresh broad beans with artichoke hearts. There is a soup called ful nabed made with the skinless dry beans where they fall to become a cream.”
Healthy food has never sounded quite so self-indulgent.
