Notes from Nan P’s Congress

Here’s a truly great eye-witness post from someone I admire hugely, so I’m not going to stand around here blethering when I could be directing you to it. Nan P went to the World DS Congress last week and I did not, but I feel like I caught some of the special bits of it when I read her account of some people she met.

Fantastic. Just heart-warmingly fantastic. Go on over and do some reading. Go!

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Hosting World Down Syndrome Congress: practical assistance

wdsc2009w

I posted a couple of weeks ago about the World Down Syndrome Congress happening in Dublin between August 20th and 22nd. I’ve been mulling it over in my mind since then, and I want to help. I’d like people’s opinions as to my first-draft plan.

The basic idea is that through the wonderful medium of blogging, I set up a site where people can offer a room to people who are visiting for the duration of the conference. I’m in very early discussion with the Congress organisers, and the rudimentary plan is that we compile a list of people who can and will, and marry it with a list of those who need. The blog would only be a harvesting site, so to speak, and not ultimately fix visitors up with hosts. Privacy absolute etc etc.

Anyway, I haven’t organised anything like this before, and I’d be keen for input from my trusted blogger friends. In due course I’ll probably come a’ begging for you all to outreach the proposal on your own blogs too. Obviously the locals are the ones most likely to spread the word to possible donors, but you far-flung folks aren’t exactly uninvolved. You might end up shacking up with us!

Thoughts please…

It’s only eight months away!

(But first a reminder about Grandparents Day for DS!)

wdsc2009wI dunno about you, but I’m a little bit excited by the thoughts of Ireland hosting the World Down Syndrome Congress in August. If you look at the website it’s clear that a lot of people have already been doing a huge amount of work to make it a very big deal. For instance, as a sidebar to the main even, which takes place between Aug 20 and 22, the Down Syndrome Medical Interest Group (Sounds like a trendy barber’s, D-Smig. Not sure they’re here for a trim though.) will be meeting on Wednesday the 19th to think big thoughts about getting important medical information out into the world. These are top healthcare professionals from around the world. You have to be a little bit in awe of commitment like that.

And that’s not the tenth of it. Take these guys: the Research Directions Group will be working

to identify and prioritise the research directions that promise to deliver practical benefits for the development and quality of life of people with Down syndrome and their families in the near to medium term (5-10 years) and identify current best practice in development, education and healthcare. It is multidisciplinary and comprehensive, including genetics, development, cognition, education, behaviour and medicine and is open to researchers, practitioners and families.

Come on! This is basically a think tank. The closest I’ve ever come to a think tank is a bloody oil tank. This is big stuff, and it’s all happening in the Royal Hospital in Kilmainham right here in Dublin. There are lots of ways to become involved, as volunteers and more, and wouldn’t it get you right into the heart of the action?

I’ll be coming back to this topic for certain, but I just thought it would be a good idea, if you’re at all interested, to just start to think about starting to think about making plans.

Here’s a contact link. You can join the mailing list and get regular updates. Laters y’all.