WHAT IS THE NATIONAL CONFERENCE? HOW IS IT DIFFERENT FROM FAMILY DAYS?
The national conference is a different type of event to the regional family days (which are great!) in that it provides an opportunity for families to attend talks, workshops, and have 1-1 consultations with experts in CHARGE. The programme is still to be confirmed but we are aiming to have something for everyone - from newly diagnosed families up to adulthood. There will also be a Leisure Club, run by Sense, that will provide fun and sensory appropriate activities for children with CHARGE but also siblings too.
And in the evening there will be an opportunity to meet up (and catch up!) with other families over a delicious dinner, as well as there being entertainment for children to keep them occupied!
HOW DO I APPLY?
Details to follow in the coming weeks / months regarding the programme, cost, and how to apply for places.
We would also like to remind everyone that we do require you to either be a member, or register to become one, of the CHARGE Family Support Group to attend the conference. If you would like to register or are not sure if you are a member please contactSimon Howard or email@example.com.
(update from Simon Howard) "If you are not a member of the Support Group just email me the following: Name, address, child's name and date of birth, phone number. My email address is firstname.lastname@example.org. If you are a member please ensure I have your latest email address. If this has changed in the past 2/3 years it is likely I may not have it. Thanks."
I LIVE TOO FAR AWAY
The conference will be held at Coventry, Hilton Hotel, same as in previous years. Unfortunately it is not possible to hold the conference at a location that will be close enough for everyone to easily attend. However please know that this is something the committee is very conscious of and we are considering rotating future conference locations to make it more accessible. For the 2018 conference we also have budgeted a small reserve of funds to help those who either live too far away or may struggle to attend due to costs.
On Friday October 26 there will be a Professionals Day specifically for professionals working with or have an interest in CHARGE Syndrome. If you would like details about this to pass on to the professionals that you know of that might be interested in this, please comment below or contact me directly.
WHO’S ORGANISING IT?
The CHARGE Family Support Group is the UK’s charity for families affected by CHARGE Syndrome. We are made up of a completely voluntary committee who are either parents, professionals, or family members of someone who has CHARGE.
In our spare time, we are working hard to make this the best conference yet. To this end, we would also welcome suggestions about any particular topics you would like to covered at the conference, and any entertainment or activities suggestions, especially for older children / teens.
Posted on Sunday 18 March 2018
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