History

Jnetics History

Jnetics, originally JGD UK, was established by Katrina Sarig in March 2010. In the UK at that time, Tay-Sachs was the only Jewish genetic disorder (JGD) for which there was any real community awareness and screening – and both these were in decline. Whilst researching another JGD, Dystonia which affected her husband, Katrina came across several international programmes that were effectively managing and preventing a wide range of JGDs.

In response to the lack of, and critical need for, any equivalent initiatives in the UK, Jnetics was created. The charity was, and remains, the only UK charity dedicated to preventing and managing JGDs. Over the last ten years, Jnetics has grown substantially, employing a team of six, supported by over a hundred volunteers. It has transformed the level of community awareness and, through partnering with the NHS, facilitated access to responsible carrier screening for thousands of young Jewish adults. Key milestones in the Jnetics’ journey are given below.

Development Timeline

Mar 2010 Charity established by Katrina Sarig and 5 Founding Trustees: Dr Alan Naftalin, Peter Jacobs, Eileen Jacobs, Dr Tammy Rothenberg, and Josie Dobrin

2010 Website launch; First meeting of Scientific and Medical Advisors with Prof Pat Jacobs (Chair), Dr Angela Barnicoat, Prof Ros Eeles, Sara Levene, Dr Ian Ellis

2011 Research and publication of UK review of JGD awareness, education, and services
and educational resources developed.

2012 Developed screening model covering 9 severe, recessive JGDs including Tay-Sachs

2013 Established NHS partnership and secured private funds to start screening service
from Nov 2013 fundraising dinner and other donations.

Feb 2014 First community screening event in London at Yom Masorti to be followed by 18 other events across UK over the next 3 years – screening 590 young adults.

2015 JGD UK rebrands as Jnetics and moves into offices at Solar House, North Finchley

2016 Jewish Care transfers their Tay-Sachs activities to Jnetics. New strategy is developed to increase Jnetics’ education and screening reach and benefit.

Nov 2016 GENEius programme launches with a Jewish Chronicle dedicated issue and endorsement from religious and community leaders

Mar 2017 First GENEius school programme delivered and then run with Year 12 students in all the targeted Jewish Secondary Schools that academic year.

Nov 2017 Jnetics Clinic opened at Barnet Hospital providing access to screening for young adults in London and across the UK via the ‘Virtual’ Clinic that started in Jan 2018.

Mar 2018 Jnetics Business Breakfast sponsored by the Dr Benjamin Angel Foundation
(DBAF) raises over £100k in support of GENEius work

2019 First GENEius university event run in Birmingham. Research carried out to expand screening panel to include Sephardi disorders. Jnetics moves to Balfour House offices

Mar 2020 Inaugural Jnetics ‘Raise to Erase’ dinner sponsored by DBAF with Ruth Angel as dinner Chair (cancelled due to Coronavirus but still raised over £250k)

Apr 2020 Jnetics develops ‘virtual’ services in response to pandemic restrictions – including
the screening clinic and delivering the first ‘virtual’ university events in June.

Aug 2020 Nicole Gordon joins Jnetics as the new CEO.