We are heading back to Rome
Dear members and friends.
We are planning some changes to the way we structure our Conference. We will look at potential topics and speakers across the lifespan that takes us from babies to adults, to maximise the information parents and carers can take away with them.
We plan to separate some of the schedule into topics relevant to affected people across the following age groups: 0-5, 6-11, 12-16 and 17+
We will still be offering some of our favourite and most useful sessions: The Sibs programme and panel, the Self-Advocates panel, an update from Jannine and Dan and the Registry, the European Research, Syndrome break outs, Grandparent breakouts and more. There will of course still be the world class créche, wonderful food from our generous hosts at the Marriott, and plenty of time to meet new friends and old in the shadow of the fantastic city of Rome.
New for this year, we will be structuring some sessions with the help of Dr Viziello Cà Grande, who has been working with the Italian families and Agèmo as part of the Rare Disease Clinic in Milan.
An impressive and evolving programme, Agèmo pays a researcher from the clinic who has been collecting data from the Italian families for the last four years. They also offer a check-up at their annual Italian conference and bespoke medical advice. Sarah Russotti, who has kindly taken charge of conference this year, is sure, and we agree, that we have much to take away from the impressive flow of information that has been established. Stand by for some very interesting presentations.
As always with our member-led, member-run organisation, we need something from you in order to help your small Management committee, as we head towards Conference:
- Ideas for topics you are interested in learning about and in what age group?
- Suggestions for speakers and contacts for them – we commit to covering airfare, accommodation and meals but as a charity it is wonderful not to have to pay a fee.
- An idea of which of you might be coming Friday morning so we can plan our agenda correctly.
- Volunteers for the Conference Working Group. As discussed at the AGM, we realise people feel unable to give up their time to join the Management Committee, so we have formed working groups. We really need some people to help us between now and July
- Our charity relies on us being able to rotate around the membership for Management Committee members, when lives get too busy for those who have volunteered. We have room for more and will welcome anyone with open arms who can help with the load.
We are all committed to doing the best we can for our Chromosome 18 Europe, but as always, we need your help. As you realise, these conferences don’t happen by magic and we all know how much you enjoy them. Thank you for listening and we are looking forward to hearing from you.
Please contact Jennifer Morrison firstname.lastname@example.org who will put you in touch with the relevant MC member.
See you in July!
Richard, Paul, Sarah, Bonnie, Maxine, Greg, Steve, Na’ama, Jade and Sara.