We’re working on putting together the 5th Chromosome 18 Europe Family Conference in the Doubletree Hilton Glasgow on June 22-24, 2018. Will you be in the next group picture?
Funds may be tighter than ever before, but just as at our first conference in 2010, getting together will be the real benefit of all the fundraising you are doing to bring us all together to laugh learn and play. Flights and accommodation have been booked by some, and replies are coming in to my requests for speakers. Thank you to everyone for suggestions for presentations: we’ll do what we can afford 😉
Thank you to everyone who is working hard to raise the funds we need to run an inclusive, informative conference.
The conference will start on Friday morning, and crèche and Sibs4Sibs registration forms will come out at the same time as conference registration forms.
Draft programme: to be confirmed.
Donna Tomlin of Contact will speak on welfare rights
Tracey Francis will talk about Preparing Parent Carers for Transition
(waiting for confirmation about sessions on puberty and toileting)
Lunch together in the hotel
Executive Function: often a huge challenge for children and adults affected by C18 disorders.
Syndrome Breakout sessions
Dinner at your own expense: lots of places to choose from on the doorstep 😉
Presentations by Dr Jannine Cody and Dr Dan Hale
Chromosome 18 Europe Research Report by Prof Richard Davison
Lunch together in the hotel
Emotional Intelligence: the ability to identify and manage your own emotions and the emotions of others. This is a challenge for many children and adults affected by Ch 18 disorders
Workshop: how to use the internet to find support in your area Katharine Newman
Bring your own laptop!
Additional sessions to be decided (dependant on funds)
FREE TIME BEFORE SATURDAY EVENING DINNER AND DISCO
Self Advocates Panel of adults affected by Ch 18 disorders
LUNCH together in the hotel
Panel of Parents
All of the above is dependent on funds: more funds = more presentations
The amazing crèche will cost up to £9,000 for three days, based on the numbers, ages and stages of the children we welcomed in Manchester. Amanda has already been to the Doubletree Hilton and worked out exactly what will go where, including a sensory area and an area where electronics will be set up. Safety and security are as always top priorities, with a high staff: children ratio to ensure plenty of fun for all.
Translation services cost approximately £10,000, and we’re glad to welcome European families who can come and get access to all of the presentations because we pay for those services.
Conference Registration fee actually covers less than one day delegate rate charged by the hotel. The generosity of our friends and families who work hard to raise funds covers the rest, so that as many families as possible can come together with the least amount of financial stress.
A Grandparent has offered to sponsor music therapy because she believes in the importance of it. Do you know any potential sponsors?
In 2016, Sarah Hunt, Mattia Meloni and Jonathan Rugman, with help from Phillip Moore, put together a really successful programme of activities for siblings aged 8 and up. We hope to repeat the programme, and that there is another adult sibling who would like to join the team. If you are 18 or over and would like to take part, please get in touch. I have a copy of the Sibshops manual to give away 😉
I’m working on a programme for Self Advocates this year, based on requests and suggestions from parents of teen and adult SAs. If funding allows, the programme will include drama and music therapy supplied by Creative Therapies. Workshop sessions to help SAs identify and deal with executive function challenges and transitions are planned. There will still be plenty of space for the all important chill and hang out times.
Candy Place has offered to do her Laughter Therapy session again this year, and I know that several people were disappointed that they didn’t know that it was open to all in Rome.