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Events & News


Keep in touch with 'happenings' here!

'NEWS': scroll down below.
'EVENTS': use this box --->>

................OR..................
use the blue navigation bar on the left, see under the News & Events maroon coloured paint splodge; news first then events come beneath.

Take a look at the "Family Support" section for other news of events coming up.

IMPORTANT NEWS; SADLY, THE MUSIC AND CRAFT DAY IN BIRMINGHAM HAS HAD TO BE CANCELLED.

BOOKINGS ARE STILL BEING TAKEN FOR THE SKI DAY ON 27TH FEBRUARY AND THE PONY RIDING IN CAMBRIDGESHIRE ON 16TH FEBRUARY. FOR DETAILS GO TO THE NAVIGATION BAR ON THE LEFT.

CHF PARLIAMENTARY LAUNCH - SPORTS WEEK
One of our members, Harrison Stedman, aged 11, gave a speech to the Children's Heart Federation's Parliamentary event on 14th May 2009. Harrison's speech was entitled "My Issues With Sports". The CHF wished to highlight the difficulties that children with congenital heart defects experience participating in sports.

The speech was recorded, and here's a link to it on YouTube (opens in a new window):
More information from:
http://www.youtube.com/watch


Over the Wall Summer Camps 2009
Over the Wall are running summer camps for children and young people affected by serious and life limiting illnesses.

Camps are being held at;
Glenalmond College, Perthshire in Scotland. Pioneer Centre, Kidderminster, Worcestershire and Bryanston School, Blandford Forum, Dorset.

If you are interested in finding out more, please visit the website listed below.

We have a supply of application forms, please request one from claire@maxappeal.org.uk
More information from:
www.otw.org.uk

Ante-natal screening, Nov 2008

Tiny Tickers have finalised thier "Best Practice" recommendations for the Antenatal Screening, Diagnosis & Audit of CHD - please find attached. Attachment Click here for the attached file | Download Adobe Acrobat

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Bryonys Useful book

This is a booklet describing, in her own words, how Bryony has coped with 22q11 followed my some sections written by her family and Julia Cadogan,Lead Consultant Clinical Psychologist, South West Cleft Unit, Frenchay Hospital.
More information from:
contact-us.asp


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"Sprouty2" gene identified for deafness!

New research from Kings College London
Don't you just love the name???
More information from:
http://www.deafnessresearch.org.uk/Discovering%20how%20Sprouty%20shapes%20the%20inner%20ear+5415.twl


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Consensus - update April 2008

You may have heard of this project - it is an attempt to get everyone on board in treating DGS/22q1.1 and singing from the same hymn sheet, with absolute best current practice. (writes Mike Hennessey, trustee)

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