Morning all and happy new year.
I haven’t posted on here in a while, but sadly I have seen lots of new people join our club since I last did. So I thought it appropriate to post about my blog.
For those who haven’t come across my blog, http://Onein300.com you might find it both useful and perhaps a light hearted read as well.
Initially I started the blog to get the most powerful statistics used in awareness at a time when we were using poor data. 1 in 300 in the lifetime risk for anyone developing MND or ALS! Putting into perspective, covid has currently killed about 340,000 in the USA and it is likely to kill about 500,000 before it is stopped.
Now when you look at MND, over 650,000 of the current living population of the USA will develop and die from MND unless we find treatments!
MND is not rare!
I write both basically silly posts about life with MND but also serious posts on research.
http://Onein300.com/research
and
https://onein300.com/the-devil-is-in-the-detail/
I have been diagnosed for 6.5 years and symptoms for 9 years.
I have seen a lot of things, come and go and come and go again, particularly in research. Sadly many false hope treatments and strategies are amongst these. Our desperation makes for a strong motivator, when in reality some of the leads are repeatedly misleading. I hope my blog can save you time and wasted rabbit holes.
Supplements (food) are ever constant worry and we are targets for some staggering claims and very very poor science claims.
On the optimistic side, we are making real progress and we are within striking distance of real treatments for some forms of our disease within probably 2 or 3 years. Research is accelerating and once we make a breakthrough in even 5% of our community industry will flood in with research cash.
Happy new year all!
I haven’t posted on here in a while, but sadly I have seen lots of new people join our club since I last did. So I thought it appropriate to post about my blog.
For those who haven’t come across my blog, http://Onein300.com you might find it both useful and perhaps a light hearted read as well.
Initially I started the blog to get the most powerful statistics used in awareness at a time when we were using poor data. 1 in 300 in the lifetime risk for anyone developing MND or ALS! Putting into perspective, covid has currently killed about 340,000 in the USA and it is likely to kill about 500,000 before it is stopped.
Now when you look at MND, over 650,000 of the current living population of the USA will develop and die from MND unless we find treatments!
MND is not rare!
I write both basically silly posts about life with MND but also serious posts on research.
http://Onein300.com/research
and
https://onein300.com/the-devil-is-in-the-detail/
I have been diagnosed for 6.5 years and symptoms for 9 years.
I have seen a lot of things, come and go and come and go again, particularly in research. Sadly many false hope treatments and strategies are amongst these. Our desperation makes for a strong motivator, when in reality some of the leads are repeatedly misleading. I hope my blog can save you time and wasted rabbit holes.
Supplements (food) are ever constant worry and we are targets for some staggering claims and very very poor science claims.
On the optimistic side, we are making real progress and we are within striking distance of real treatments for some forms of our disease within probably 2 or 3 years. Research is accelerating and once we make a breakthrough in even 5% of our community industry will flood in with research cash.
Happy new year all!
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