We’re having another fundraiser!
I know. Another one. We are *relentless* in the pursuit of a cure. Cures need funding – especially for one as rare and as unknown as ours.
Let’s try a thing right now – you probably know that Kai has NKH. Do you know what NKH stands for? Can you pronounce it without stumbling over all the many syllables that it has?
It’s okay, we couldn’t at first either. Nonketotic Hyperglycinemia. In the beginning, my eyes would kind of glaze over the ‘glycinemia’ bit and I’d slur it into one really quickly as if by slurring no one would know I couldn’t say it properly. In the end I went away and had a bit of a practice. If I had to practice it I don’t expect anyone else to be able to say it right off the bat.
But… if you can’t say it – if it’s not even easy to pronounce, how can we spread awareness about it? How can we raise all the money for a cause that no one knows about?
So – Nonketotic Hyperglycinemia.
The first bits pretty easy: Non.
The next word, phonetically: Key-tot-ic
Ketotic means the body is using energy from ketones in the blood. When the body breaks down fat, it breaks them down into ketones.
The last word Hyperglycinemia.
Phonetically: Hyper (that’s pretty easy) Gly – sin – e – me – a
Hyper essentially means elevated. Glycine is an amino acid – it’s what Kai can’t process. All together Hyperglycinemia is where there are high levels of glycine in the blood.
NKH. Nonketotic Hyperglycinemia.
Do you know what’s easier than practicing how to say Nonketotic Hyperglycinemia??
Lots of delicious wine. By the Thames. In a fancy fancy sailing club like we’re all very well to do. We’re doing a wine tasting in a sailing club. It is going to be delicious.
When: Sat 12 August, 3:15pm
Where: Ranleigh Sailing Club, Putney, SW15 1LB
Cost: £5 to book your ticket, donate what you think it was worth on the day
Please come, if you can. We’d love to meet you, and hang out and drink wine.
Thanks to Chris at Majestic Wines in Putney for donating his time for the wine tasting, and Sohail from the fab Clia Care for donating the time at the venue + palette cleansers. You guys are amazing and we love you.