ALS TDI Summit Friday 5th November.

[Rosemary6NT]

Ellie Thanks Ellie, that's great, I will look at it later xx

[Ellie]

Rosemary6NT I found this paper on the multistep process.

It is very detailed but you can skip sections, the stats and maths if that's not your thing, without losing significant context. Give it a go. xx

[Rosemary6NT]

Ellie that's interesting. Now you've done all the hard work researching are there any digestible references you can point me to? xx

[matthew55]

If it wasn't for bad luck I'd have no luck at all. 😉😅😘😍xx

[Ellie]

I read that amongst the “high risk” occupations are agriculture and construction/carpentry. It so happens that the first 18years of my working life were spent in agricultural research as a biochemist until I went off the tracks a bit and became a full time craft woodturner which I only retired from as I became physically incapable of continuing. Coincidence?

The general consensus is that a multistep process requiring six distinct steps leads to the onset of sporadic ALS. These six exposures are both genetic and environmental, and the final one is the onset trigger, so we basically had 5 chances to dodge the ALS bullet, but didn’t…

That requires a special amount of (bad) luck, eh xx

[Rosemary6NT]

Sorry I won't be able to attend I'm too busy watching paint dry 😉😁👀😍xx

😂😂😂

[Rosemary6NT]

Ellie in the early part of this year I was very keen on researching everything but as the reality started to kick in I dropped the research and started a painting course online which took all my focus. From a completely detached standpoint it is the most fascinating problem untangling the cause/causes of the various MND’s but so much to read and learn and try to make sense of! My DNA analysis shows that none of the common genetic causes are there. Interestingly (to me, sorry this is all about me 🙄) I read that amongst the “high risk” occupations are agriculture and construction/carpentry. It so happens that the first 18years of my working life were spent in agricultural research as a biochemist until I went off the tracks a bit and became a full time craft woodturner which I only retired from as I became physically incapable of continuing. Coincidence? Anyhoo, I’ve started back with a little bit of research now and again when I’m in the mood. Sorry for waffling.

[LindaB]

I listened in for the 1st hour and will look forward to the recording for the rest. Much of the terminology new to me too...but fascinating. My biggest take home, even from that hour, was how determined and driven the scientists involved are! Devoted to finding better treatments for slowing down...stopping...reversing ALS/MND...
We live in hope🙏✊🏻👍🏻

[Ellie]

Rosemary6NT Yes, they will have the recording available on the ALS TDI website.

You'll learn the ALS-specific terminology and concepts in due course, I'm sure - the more you read, the more you learn, if you want to, that is, there's no compulsion...

xx

[Rosemary6NT]

I watched the scientific stuff in the first half but hope there is a recording so I can go over it again. In a former life I was a biochemist but it was still too much and too fast for me to take in. What did everybody else think? With so many possible contributing factors to MND it’s like searching for a needle in a haystack

[matthew55]

I guess everyone is enjoying fireworks as I only posted that comment to get a reaction sorry.

[matthew55]

Sorry I won't be able to attend I'm too busy watching paint dry 😉😁👀😍xx

[LindaB]

Anyone in the meeting?

Just says the meeting host will let you in soon🤔

Ok....in👍🏻

[Rosemary6NT]

Thanks Ellie I have registered too, a Zoom link has been promised but not received yet...
Correction, it's just arrived

[Ellie]

Yes Doug Carpenter definitely check your Spam folder - I received a second 'reminder' link in the last 30mins. xx