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Jnetics Inaugural Fundraising Dinner Monday 16th March 2020 WELCOME FROM OUR ABOUT JNETICS DINNER CHAIR AND CHAIRMAN Jnetics is the only cross-communal organisation dedicated to managing Welcome to Jnetics’ Inaugural Fundraising Dinner. We greatly and preventing Jewish genetic disorders (JGDs) in the UK. appreciate your support in choosing to be here tonight. We focus on genetic conditions that, although not exclusively Jewish, Our son Benjamin was diagnosed with cystic fibrosis – one of the have a significant impact on the lives and well-being of Jewish people. disorders we now screen for - when just a few days old. Despite two Our mission is to eliminate new cases of severe, recessive JGDs and to hours of medication and treatment each day – sometimes more - he was a improve the management and prevention of dominant hereditary cancers researcher at the Royal Brompton Hospital, London, a guest investigator at that disproportionally affect our community. Rockefeller University, New York, studied at Queens’ College, Cambridge and became a Doctor. He played tennis and golf and was an accomplished skier, Launched in 2017, our GENEius programme provides education and keen photographer and swimmer. He loved Judaism, music, travel and food. screening for recessive JGDs in schools, universities and elsewhere. Our He married his beloved Louise. aim is that JGD screening becomes standard practice – so erasing these But Benjamin died in 2005, aged just 26. conditions and saving many lives and avoidable tragedy. Benjamin’s hope was that nobody, ever again, would have to suffer – and die - from recessive genetic disorders like his. That no other family would have to go through the pain that we do. So, the GENEius programme has a simple aim – to eradicate these disorders, ensuring our children are born free from any of the Jewish genetic disorders we screen for. JNETICS THANKS... It’s not difficult to do. No complicated research is needed; no expensive drug regime or clinical procedure; the infrastructure is in place. All it takes is a sample of saliva - and your support this evening for our GENEius education and screening programme. Jnetics thanks The Maurice Wohl Charitable Foundation and The Bloom Foundation for their support, without which the GENEius programme The money you RAISE tonight can ERASE these disorders forever. would not have been possible. We are fortunate to be entertained this evening by the composer for film and television, Debbie Wiseman OBE, and by the renowned solo violinist and chamber musician, Jack Liebeck. We are really most grateful to them both for giving their time to support us this evening. We also thank all those who have enabled Jnetics’ GENEius programme to establish itself so strongly in the Jewish Community in just three years, and in particular The Maurice Wohl Charitable Foundation and The Bloom Foundation for their invaluable support. We hope that, as well as helping to make this evening a great success, you have a wonderful time. Please give generously. Tonight, together, we can achieve something truly remarkable. Ruth and Anthony Angel Dinner Chair and Chairman This evening’s dinner is sponsored by the Dr Benjamin Angel Foundation in memory of Benjamin. 3 MESSAGE FROM OUR EXECUTIVE DIRECTOR Thank you so much for joining us at our Inaugural Jnetics Fundraising Message from the Chief Rabbi dinner. In honour of the Jnetics fundraising Dinner For those new to the charity, I hope this evening provides an insight into the vital work we do addressing an issue that can affect anyone in our community. I am delighted to extend my best wishes to Jnetics on the occasion of your Inaugural Fundraising Dinner. When Jnetics was established, Tay-Sachs was the only Jewish genetic disorder (JGD) the UK community was familiar with – and There is no more precious gift in this world than human life and Jewish tradition has screening for it was limited and in decline. Building on our early education long taught that we have a particular responsibility to protect that gift to the best of our ability. Over the centuries, the practical application of this important maxim has and screening work, in just three years the GENEius programme has evolved as we have broadened our understanding of physical health and wellbeing. transformed awareness of JGDs and the provision of screening for young Jewish adults – the parents of the future. Among the most remarkable medical developments of the modern age is our ever- deepening understanding of genetic variation and heredity. With learning comes Through GENEius, thousands of Jewish students, engaged couples and knowledge and with knowledge comes responsibility. Our responsibility is to learn other young adults now have the knowledge needed to ‘erase’ their risk of passing on any of the severely all that we can about genetic disorders which may affect the Jewish community debilitating, life shortening JGDs included in our programme. disproportionally so that we are better prepared to diagnose and treat them. As the only UK organisation addressing this issue across the UK Jewish community, it is vital our work I am deeply impressed with the outstanding work of Jnetics in their quest to ensure continues – not just for severe, recessive JGDs but also for hereditary cancers that greatly affect Jewish people that the UK Jewish community is fully informed about how these genetic disorders can be managed and prevented. and can be better managed and prevented. We are also fortunate enough to have had the opportunities to share our knowledge and experience with other communities who share similar challenges. I wish you every success in your crucial, life-saving work. May all your continued endeavours be blessed. I am most grateful to those who have contributed to our progress to date – the community and religious leaders who endorse our work; the schools and synagogues engaging with our programmes; our dedicated volunteers and team. Thanks to Ruth Angel for organising this evening and to the Dr Benjamin Angel Foundation for its sponsorship. Not least, our thanks go to our generous donors without whom GENEius would simply not, and cannot continue to, exist. Chief Rabbi Ephraim Mirvis Though so many health risks are out of our control, the risk of passing on a severe JGD can absolutely be February 2020 • Shevat 5780 managed and Jnetics is enabling this – erasing unnecessary heartache in our families and community now and in the future. Thank you so very much for your support and please enjoy the evening Katrina Sarig Executive Director and Founder 4 5 RECESSIVE JEWISH GENETIC DISORDERS (JGDs) Message of Support for the Jnetics Dinner Brochure Jewish people, like other ethnic groups, are at increased risk of inheriting certain genetic conditions I am very pleased to have this opportunity to support Jnetics and their work to improve the When both partners in a couple are carriers of the prevention and management of Jewish Genetic Disorders. Their cross communal efforts, to make relative to the general population. While these same recessive condition, their child will have a: seeking carrier screening second nature so Jews in the UK can be on par with what has been disorders vary in severity, some are very debilitating standard practice in Jewish communities overseas for many years, is invaluable. and life-shortening - and a few, like Tay-Sachs, are • 25% chance of not being a carrier I am particularly supportive of Jnetics' programme focussing on making young people – in schools, fatal in childhood. universities and young couples marrying through synagogues – aware of how they can be screened to prevent new cases of severe, recessive JCDs appearing in the community and in their lives. • 50% chance of being a carrier Our genes contain instructions for how the body Changing attitudes and behaviour in the UK Jewish Community towards this ambitious goal is develops and functions, and we receive two copies • 25% chance of inheriting the disorder essential and encouraging young people themselves to spearhead this project with their active participation is to be applauded. of each – one from our mother and one from our father. Genetic disorders are caused by adverse The same risk applies to each conception, I am particularly gratified to hear that in 2020 Jnetics will not only continue their Ashkenasi Jewish screening tests but will expand to include disorders relevant to people of Sephardi Jewish Ancestry changes (or mutations) in our genes regardless of the outcome of previous pregnancies. – clearly, including more and more people from our community can only be of great value. I strongly encourage as many Sephardim as possible to get involved with Jnetics’ efforts to promote Recessive disorders require both copies of a gene health and well-being within our community. pair to be faulty for the condition to develop. An CARRIER CARRIER I wish Jnetics, at this time of their inaugural dinner, the greatest success as they continue to individual who inherits one faulty copy and one PARENT PARENT pursue their ultimate quest to affect Jewish lives positively now and for our future generations down the ages. normal copy is known as a ‘CARRIER’. With my warmest wishes Carriers of recessive disorders are unaffected themselves but can pass on the faulty gene to their children. Rabbi Joseph Dweck 1 in 5 people of Ashkenazi origin is a carrier of at least one severe, recessive Jewish genetic disorder. Around 1 in 200 couples in our community are NON-CARRIER CARRIER AFFECTED carrier couples for a disorder we screen for. CHILD CHILDREN CHILD 25% 50% 25% 6 7 THE GENEius PROGRAMME DISORDERS CURRENTLY COVERED Jnetics’ GENEius programme aims to eliminate Common symptoms of the disorders covered by the Jnetics screening service are given below along with new cases of severe, recessive JGDs in the UK carrier frequencies in Ashkenazi Jews.

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