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GENETIC SCREENING FOR TAY-SACHS DISEASE

 

 11th May 2015 

Genetic Screening in the Manchester Jewish Community 

It is many years since a child was born in north Manchester with Tay-Sachs disease. The valiant efforts of the late Dr Sybil Simon z”l offering information and testing sessions in schools and Shuls did much to promote awareness and protect our community. But the Tay-Sachs gene has not gone away, and just like vaccination we need continued vigilance. I have sat with families over the years, struggling to understand why their child has one of a number of progressive and life threatening, but untreatable genetic disorders. “Why did nobody warn us, why did no one tell us? How were we allowed to take such a risk?” 

There has not been a genetic screening event in Manchester for more than five years and I wait with dread for the next announcement that a couple have found out the hard way that they are both carriers for Tay-Sachs or one of the other genetic conditions for which carrier screening is now available. It is now possible to screen for an extended panel of nine Jewish genetic disorders that are prevalent amongst Jews with eastern European origins. As well as Tay-Sachs thee include Canavan disease, cystic fibrosis, familial dysautonomia and Niemann-Pick disease. There are two ways to find out that you are a carrier. The easy way is from a simple blood test; the hard way is if you remain untested - when both parents are carriers and have a child with the condition. 

This Sunday, 17th May you have the opportunity to have this test. This is the first screening session for the extended panel in Manchester and is being organised by Jnetics,(www.jewishgeneticdisordersuk.org/),a community charity. Information, counselling and testing will be available at Yeshurun Synagogue, Coniston Road, Gatley, SK8 4AP from 10-1.30pm. The test costs £190 and takes a small blood sample. The blood is replaced in minutes, the cost takes a little longer. The single Tay-Sachs test has always been offered without charge, funded by the NHS. But the new, extended panel of testing is not supported by the NHS. We have really tried, but there are cutbacks and the stretched NHS will not fund this extended testing. There is a cost, but there is also a cost of not taking the test; of burying your head and taking the risk. 

Those involved in taking the test on Sunday are all volunteers, the £190 cost is the absolute minimum cost of the laboratory genetic testing. We are there on Sunday for 5, 50 or 150 people. We prefer people to pre-register a time slot on the website, but you can just turn up on the day. There are subsidies available to offer financial assistance, if you to ask, or email [email protected]. The question now for the Manchester Jewish community is will families want to protect their children and grandchildren? Your participation will decide whether efforts continue or whether we just wait for the next unfortunate family. It may become a question of ‘Use it or lose it'. I remember a family saying to me “You knew. You knew there was something Jewish and no one warned us”. Well the message about screening is out there now. Whether people do something about it is now the challenge. Please come along and take the test, the chance. 

Dr Ian Ellis MB BS FRCP BSc 

Consultant Clinical Geneticist 

Dept. of Clinical Genetics 

Alder Hey Children's Hospital 

Liverpool L12 2AP 

Tel: 0151 802 5000 / 5008 

Mobile 07989 272 376 

Fax: 0151 802 5096 

E mail: [email protected] 

 

 

 

 

The Nicky Allliance Centre

 

Dear Sir/Madam

As you know The Nicky Allliance Centre is a wonderful place and looks after older members

of our community who are either visually impaired, lonely, frail, disabled or suffering from

an age related illness. Take a look at our website for further information

: www.mjcc.org.uk

With that in mind we are always looking at different ways to help bring in funds to support

this wonderful place. One of which is our collection boxes, we feel there are so many

families in the community who could help and don’t have our boxes.

I was wondering if you could ask the members if they would be willing to take one of our

collection boxes.

Perhaps an insert in one of your mailers ( we could supply a flyer to you ) or if we

are mentioned in an email that you will be sending out shortly ? If they were to agree,

they can contact us directly at the fundraising dpt on 740 0111 or email

[email protected] and we can drop off a box, when it is full we come and collect it and

supply an empty one.

I look forward to hearing from you with hopefully a favourable reply to see if you can help.

Kind regards

SHELLEY

Shelley Blackston

Fundraising Executive

The Nicky Alliance Day Centre

85 Middleton Road

Manchester

M8 4JY

Tel: 0161 740 0111

07841 477 332

www.mjcc.org.uk

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