Sooooooo…. the World Down Syndrome Day Committee changed their campaign from “Odd Socks” to um, “Lots of Socks”.
I am frankly perplexed and mystified by this committee’s connection between socks and Down syndrome.
I mean, really.
What does a a cloth foot garment have in common with the presence of an extra chromosome?
I really wish they’d just keep the socks in a drawer where they belong and focus on something simple and classy.
That’s easy, it means something – both the date and the fact that it’s 3 copies of a the 21st chromosome (= Down syndrome!). It’s interesting.
I like these t-shirts from Rhyme and Reason – great design. If they made that bold 3-21 one plump-mama compatible (with a girl-cut and v neck), I might actually wear it every day. As it is, it’s the type of t-shirt that makes people curious (in a good way), I think – which is part of what raising awareness is about. Right? Right.
A percentage of each t-shirt sale goes to NDSS which brings me to my question about Nella’s Triple Crown and where the money goes. I wrote to the NDSS and asked if they had something that breaks it down a little better than what’s on their site (I included a link); they wrote back with the same link and said if I wanted more information, I could ask for it [insert facepalm]. I suppose I could be writing back to them now instead of writing this post, and get into it with them but I don’t feel like it. If they didn’t care to read my email thoroughly enough the first round, that says something to me.
Their graphs are pretty vague and general and don’t say much about a lot.
I think the odds are good that they are not outright doing anything bad with the money
– frankly, there isn’t enough to be building golden staff toilets or stashing it in the Caymans or whatever.
The odds are also good that the money can be spent a lot more thoughtfully and productively.
I can safely make this assumption as there is a great deal of community dissatisfaction with the NDSS and because we don’t actually see a lot from them in the way of results.When uproars happen like they did in the case of the Today Show and the whole “we’re safe” thing – where is the NDSS? When some celebrity or another goes and insults people with Down syndrome, where is the NDSS? I’m asking this because it’s all over facebook – I’m only giving voice to what I hear over there and what I see in action.
The IDSC is a great comparison: these guys bust ass on a dime! They have virtually no budget – it’s purely volunteer – and they are all over the place!
I wish the NDSS were even a fraction as active and visible.
I think for those of us that would like to see that – or for specific money being used in ways we think are valuable, we need to be writing and telling them how we’d like to see money being used. We help raise money too, after all – directly and indirectly. We do have a say. So, if you want or think more money needs to be spent in research, WRITE. And be public about it – the more of us that are aware of what each other is doing, and the more in synch we are, the more results we are sure to have.
That’s part of raising awareness too, right? Right.
Here’s how to make your opinion known to the NDSS:
…and while you are at it, can you ask them to PLEASE put a link up to Down syndrome Blogs?
I’d really love to see a link to Down syndrome Blogs on their site so that people – especially new parents – can hear the voices of many, find families to connect with on their own. When I asked the NDSS if they could PLEASE put the link up, they said they “didn’t have room for it”. But come on. It’s a small link. Maybe they can be convinced.