Heart2Heart - ISSUE 47
July 2017
 
 
  
 
 
Dear Heart Community Members,
 
Welcome to the 47th issue of the Heart2Heart newsletter. 
 
This publication aims to keep its subscribers informed and updated with the latest news, events and policy briefings from all corners of the CHD community. 
 
We're always working to improve Heart2Heart so your comments and suggestions are more than welcome. Your messages should be directed to info@chfed.org.uk
 
 
 
 
 
Research & development
 
CHD consultation closing
 
You may already be aware that NHS England’s Consultation on Congenital Heart Disease (CHD) will be closing on Monday 17 July 2017.  The consultation has been produced in an easy to read format as well as being translated into several languages including: Gujarati, Hindi, Polish, Punjabi, Tamil, Urdu and Welsh. 
 
 
Young people with congenital heart disease views are still being especially sought to give their opinion about services.
 

 
 
World Congress of Paediatric Cardiology & Cardiac Surgery
 
The 7th World Congress of Paediatric Cardiology and Cardiac Surgery takes place on 16 – 21 July 2017 in Barcelona and its core theme is ‘bridging together’ all the major specialities in the fields of paediatric cardiology and cardiac surgery.  Scientific presentations will include foetal congenital heart disease (CHD) and screening as well as science and surgery supporting adult CHD.
 
 
 
 
Home news
 

Maximum awareness of DiGeorge syndrome, VCFS and 22q11.2  

CHF are continuing to make 2017 their year of extensive CHD Awareness.  And we’re greatly inspired by Prof Martin Elliott’s endorsement of CHF partner group Max Appeal! a UK registered charity supporting families affected by DiGeorge syndrome, VCFS and 22q11.2 deletion:
 
“…I am extremely impressed by both your handbook and the work your team have achieved so far. If there is anything I can do to help I would be delighted to do so.”
 
Martin J.Elliott, Consultant Cardiothoracic Surgeon, Great Ormond Street Hospital

 
 
 
 
Downs Syndrome and the CHD journey 

The collegial element of collaborative work amongst CHF’s partner groups is also being extended to other UK and international support groups.  These include CHF’s Down’s Heart Group developing links with international Down’s support groups including speech and language therapy; dance; music; theatre and sport organisations.
 

 
 
The Congenital Heart Disease Voice

That’s what each of CHF’s inspiring Fundraising Stars are helping to make heard, loud and clear.  Without fundraising efforts, CHF’s daily CHD support would be extensively curtailed.  This summer we’re especially thinking about all those CHF Fundraisers that brave the elements throughout the year to ensure more funds are forthcoming for our CHD awareness campaigns.  We’re inspired how one motivated individual can change the CHD narrative for so many. 

Read more about CHF’s Fundraising Stars

 
 
 
 
 
 
Information & policy
 
 
Exercise programmes and
CHD children

International research cited in ‘Sports’ has addressed: ‘The Influence of Exercise Training on Quality of Life and Psychosocial Functioning in Children with Congenital Heart Disease: A Review of Intervention Studies’ and recommends that children with CHD should be encouraged to participate in 60 minutes of daily physical activity as well as being involved within the design of the exercise programme to receive maximum psychosocial benefit.
 
 
ICE – In Case of Emergency

CHF partner group Evelina Children’s Heart Organisation (ECHO) has a page devoted to information on medical alert bracelets.  Please share this information with your colleagues and heart families and children.

More about ECHO – Evelina information about MedicAlert.

More about MedicAlert. 
 
CHF, Dragon Enterprise Centre, Cullen Mill,
Braintree Road, Witham, Essex CM8 2DD
Tel: 0300 561 0065
 
Registered charity No 1120557, Registered company No 6329763