About the Family Support Group

Chatting with other parents and carers provides a unique and much needed opportunity to share anecdotal information. It offers the chance for people to tell their own stories and give support to each other.

Getting to meet children and adults across the broad range of CHARGE helps get a better perspective on the condition. It also serves to break down the isolation that can be felt by many carers.

For parents of very young children, it gives hope for the future which is crucial, especially in the early days after diagnosis. But the Support Group is not just for families, it is there for anyone involved with CHARGE who needs support, advice, or who in turn wants to give support to others.

How it all Started

The CHARGE Family Support Group was set up in 1987 when a doctor passed the name of Sheila Draper onto other families with a CHARGE child. Sheila had expressed that she wanted to meet other children like her son, Gregory, and so the Family Support Group was formed.

Keeping in Touch

The aim of the group, as Sheila saw it, was for parents to be in contact with each other, either by letter or by telephone, to offer encouragement, support and to share information. She decided that a newsletter would be an efficient way to keep families informed and up to date The first issue was circulated to 10 families in November 1987.

Simon Howard is the current editor of the newsletter. If you would like to contribute to it, or would like to receive it, please contact Simon on 020 8265 3604, or at si_howard@hotmail.com. The newsletter is sent out approximately 3 times a year to almost 200 addresses and whilst some are sent to professional organisations, the majority go to families throughout the UK and a few in Europe.

Getting Together

Whilst attending the Sense Family Centre in Ealing, London, with her son Gregory, Sheila was offered its facilities as a meeting place for the families that she had made contact with. So it was that the first gathering of CHARGE families took place in 1988 with 9 families taking part. These summer meetings in Ealing have become an annual event. Over the years there have also been get-togethers in Birmingham, Manchester, and Cambridgeshire as the Support Group continually searched for venues that would meet the needs of families nation-wide. Currently there are annual meetings at the North Staffordshire Adventure Playground in Newcastle-under-Lyme, at the Sense Family Centre in Woodside, Bristol, as well as the day at the Family Centre in Ealing.

It is proposed that as membership increases and with finances permitting, more venues will be arranged in other parts of the country to enable families to meet up with each other locally.

Getting Involved

Membership of the group is free. Now a registered charity, the group relies on donations for its continuing existence. The membership covers the very wide spectrum of CHARGE and includes children of greatly varying abilities and disabilities. Some parents of deceased children have remained as members and some of these are still actively involved.

New families are welcomed to the group, sent articles that have been written about the condition and given a mailing list of other group members. Members are encouraged to be as active within the group as they like or simply add their names to the maiiing list to receive newsletters.

Members are sent questionnaires to complete and this information is part of a database that is used to help families give each other support and advice. It is also a good source of information for any professional who may want to research into the condition.

Michael Adeye - parent of a teenager with CHARGE
Colin Anderson - Senior Communications Officer, Sense
Yvonne Arnold - parent of a teenager with CHARGE
David Brown - former Head of The Family Centre, Sense
Rodney Clark - Chief Executive of Sense
Sheila Draper- parent of a teenager with CHARGE & former coordinator of the Family Support Group
Nick Draper - parent of a teenager with CHARGE & former Chair of the CHARGE Family Support Group
Dr Barry Jones - Consultant Opthalmologist
Hazel & Gareth Jones - parents of a teenager with CHARGE
Dr Jeremy kirk - Consutant Paediatric Endocrinologist
Kim & Ian Kirkbride - parents of a child with CHARGE
David Levey - parent of a child with CHARGE & CHARGE Development Officer, Sense
Hannah Levey - parent of a chid with CHARGE & first piont of contact for the CHARGE Family Support Group
Taz Mahmood - parent of a child with CHARGE
Joff McGill - Family Networks and Branches Manager, Sense
Miss Isabelle Russell-Eggitt - Consultant Opthalmic Surgeon
Jackie Turner- parent of an adult with CHARGE



This information was produced by:

Sense
The National Deafblind and Rubella Association
11-13 Clifton Terrace
Finsbuy Park
London N4 3SR

Tel: 0171-272 7774
Fax: 0171-272 6012
Minicom: 0171-272 9648

Copyright © Sense January 1999