Want to be our next featured 22Crew member? Contact Us!

Welcome to our website.  Whether you are personally affected by the syndrome, know somebody affected, or are a professional looking to find out more about 22q Deletion Syndrome, we hope that you can find all the information you need on this site.

The 22Crew is the only registered charity supporting 22q DS in the UK run exclusively by parents of children with the syndrome. We are thus completely motivated to ensure our members interests come first.

There are many sites dedicated to supporting families affected by 22q DS but we aim to offer you everything you need here.  As well as our own content, we'll provide you with numerous links to other sources of information.  We operate as a lean organisation, using the newest web technology to connect our members, collaborate with our colleagues and volunteers, attract fundraising, publish information and organise events at the lowest cost possible to ensure we maximise the value of all donations. 

Our inspiration is our own children.  The founders each have teenage sons with 22q DS.  Over the past decade, knowledge about the syndrome has accrued as research progressed.  Much knowledge tends to be centred around babies, young children, the common heart defects, palate problems, speech and language issues and psychiatry. Recently efforts have been focussed on genetics.  

As our own 22q DS children navigate their teenage years, The 22 Crew want to concentrate research and support for young people and adults as we are aware that this group of individuals are currently under-served.

We are registered as a charity in the United Kingdom with Her Majesty's Revenue and Customs, and have also secured charitable status with the UK Charity Commission.

If you have any feedback about the content and usability of this site, please send your comments via our contact us page.

UK Registered Charity No.1146975


  • How the Immune System Works Ever been baffled by the terminology used by medical professionals when they're trying to explain immunity problems?  This booklet produced by the Immune Deficiency Foundation will help!  Our Immune ...
    Posted 12 Mar 2014 10:56 by Lindsey Stedman
  • Useful Information Regarding Changes to England's SEN system Many thanks to Contact a Family for this helpful information regarding changes to the SEN system for England with effect from September 2014.
    Posted 4 Mar 2014 02:15 by Lindsey Stedman
  • 2nd Annual General Meeting (AGM) The date of our 2nd AGM has been set for Thursday 27th February via Google Hangout.  Full details of the resolutions and the proxy voting form for voting members can ...
    Posted 4 Feb 2014 09:45 by Lindsey Stedman
  • Football Teams Support The 22Crew Middlesbrough, Watford and Celtic football clubs have all very generously donated signed team shirts to us.  These are currently being auctioned on eBay to raise much needed funds.  Please take ...
    Posted 26 Nov 2013 05:56 by Lindsey Stedman
  • 22Crew Contribution to SEN Journal Lindsey Stedman, Chair of Trustees, contributed to an article titled: Supporting children with genetic syndromes in the classroom: the example of 22q deletion syndrome It was published in Support for ...
    Posted 16 Sep 2013 04:20 by Lindsey Stedman
Showing posts 1 - 5 of 46. View more »