Posted by Martin Stevens on 3/18/2018 12:10:32 PM
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.
For now, thanks for reading and keep checking FB and your emails for more details in the coming weeks!
- The CHARGE Family Support Group committee - Dr Jeremy Kirk, Peter Hughes, Martin Stevens, Claire Vincent, Leanne Howie, Esther Freeman, Gail Deuce, Simon Howard, Steven Ho
Hi everyone now that the weather is warming up......supposedly we are getting ready for the bi annual conference which is detailed below. this is a great opportunity to network with other families and also raises the profile of CHARGE with professionals.
We have also had a number of new faces join the Facebook group which is fantastic and a warm welcome to all of them.
Please remember that the face book group and the actual membership group are different and you will need to register with Simon email@example.com to be added to this list as registered families will be given priority booking which is normally done via eventbrite
Posted on Wednesday 6 April 2022
CHARGE syndrome, which affects approximately one in 10,000 newborns worldwide, is associated with neurological and behavioural conditions like intellectual disability, attention deficit disorder, conv…
Posted on Tuesday 22 March 2022
A teenager who helped thousands of people learn British Sign Language (BSL) during the first Covid-19 lockdown is being turned into an animated character in new lessons.
Posted on Tuesday 11 January 2022
Taidgh Hughes with family and friends will be making an epic walk along the Jurassic coast in memory of his son that passed away having been diagnosed with CHARGE Syndrome which is a rare genetic dise…
Posted on Tuesday 8 December 2020
Study looking at a range of behaviours, skills and impairments in CHARGE syndrome.