Egm invite

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June 2013

Extraordinary General Meeting Saturday 13 July 2013, 11am ‘HeartLine Families’

The HeartLine Trustees are proposing that we change to a Charitable Incorporated Organisation ’HeartLine Families’. As a member of HeartLine Association you have a right to vote on this proposal at the EGM on 13 July. There is more information in the enclosed letter and on the website about this change. The meeting will be held at the National Council for Voluntary Organisation, 8 All Saints St London, Greater London N1 9RL from 11am. Please let us know if you are able to attend – email or call 03300224466. HeartLine supports children with heart disorders and their families whatever the condition wherever it is treated. This will continue to be our objective. It is what differentiates us from the many other groups which provide support for those having particular condition or being treated at a particular hospital.

“Didn’t I tell you ...

… I have a new email, that I’ve moved twice in the last year, that I’ve changed my name, that I never use that mobile number?“ Tell us now so we can keep in touch. We will mail out occasionally, but postage is extremely expensive and emailing you will be our main form of contact, so please keep us up-to-date with the email address you would like us to use. Email or call 03300224466.

HeartLine Activities Heart children book We are hoping to publish a new edition of Heart Children: a practical handbook for parents in the coming year – the current edition is available and free to those registered with HeartLine.

Activity breaks We’re busy making the final arrangements for this year’s PGL short breaks for siblings and separately for heart children. Details for next year will be along soon. If you have children 9 years+, do consider giving them an opportunity to take up these few days to spend time with their peers outside the family

Wetsuits There was a longish break in our ability to provide wetsuits, but we are now able to get them out for heart children of those registered with HeartLine.

We are very pleased to put you in touch with other groups, for their special expertise, so ask if you need help we cannot provide. Leaflets Dental care for children with heart conditions – looking after teeth and gums is important for all children, but particularly children with some heart disorders who are vulnerable to endocarditis – a disease that affects the heart. HeartLine’s leaflet will help to explain Growly Bill and the Outpatients Clinic how to deal with the extra problems of protecting your child, such as sweet-giving grandparents, poor enamel, sugar in medicines, high calorie foods, acid reflux and many more. Baby Bill and Growly Bear and the Outpatients Clinic – ever popular colouring books, to explain to younger siblings about babies with poorly hearts, and to help heart children cope with visits to outpatients. Growly Bill cover 2012:Layout 1



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HeartLine Association is a Registered Charity No. 295803

Fundraisers Check to help out people fundraising for HeartLine – or find an event local to you to raise sponsorship. Let HeartLine know what kind of help you need to get your fundraising event of the ground. Can you nominate HeartLine for your school or employer’s charity of the year?

Awareness Not just for fundraising, but to spread the word about the help that is available – can you talk to local groups about bringing up a heart child and the difference support for families can make? Child care courses at a local college, mother and baby groups, community centres, libraries – make contact and see if they could use a speaker.

Can you be HeartLine support for your postcode area? Many families joining us say that they would like contact with other families near them – they have access to the internet, but what they want more than anything else is to find families who share the world of children’s heart disorders, while offering the shared joys of family life.

Focal point If you still have a young family, and think you could be a focal point for people in your area, please get in touch. When a family in your postcode area joins HeartLine, we will ask you to contact them. If it is a bad time for you (or, let’s look on the bright side, you are on holiday) we find the next closest family. It can be email contact if that is what you are more comfortable with, and anything you don’t want to handle, send to the Office!

Arrange events? Christmas is coming (oh yes it is) and we need HeartLine families who can arrange fundraising and Christmas parties throughout the UK.

Properly done Often we can’t take up fundraising offers because we have no one locally ‘on the ground’ who can make sure that it is properly done, no one is misled, and  no one heads off with the cash!

Able and willing


Fundraising could involve approaching your local football club for a spot in their pre-Christmas programme (or Boxing Day match) and a collection at the ground. Or getting permission to collect at railway stations or shopping malls, and checking that times are covered, there is somewhere for people to change and leave their belongings, and someone responsible for the collection.


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If you would like to help (and are able as well as willing!) please contact the   Office.

HeartLine Board of Trustees Hazel Greig-Midlane – Chair Denise Hadlow –Treasurer Sofia Kelesidou Natalie Persoglio Trustees can be contacted through the office Tel: 03300224466 Address 32 Little Heath London SE7 8HU