Tomorrow is the Great North Run, and Caroline Quibell will be tackling it with her new hip in memory of her late husband. She and her eldest son are raising money for My Name's Doddie Foundation which funds research into MND/ALS.

#GoodNews #GreatNorthRun #Race #Fundraising #MND #ALS #MotorNeurone #HipReplacemnt #Heroism

https://www.msn.com/en-gb/health/other/pensioner-83-with-new-hip-to-tackle-great-north-run-in-memory-of-late-husband/ar-AA1gq0me

I just found out that a dear real-life friend of ours, who was diagnosed with #MND/#ALS about three years ago, is now abound 70% paralyzed, bound to his bed, and unsure if he'll last another year because he's in constant pain and torture.
I've known him more than13 years now, and i've only spent about a month worth of time with him directly. I met him when I played with my Band in Malta on a festival. He was a Reenactor Knight, there with his sword fighting group named FKOR from Ireland...

Just a little under 2 months from now, I will be proceeding on a 27km (under 17 miles) walk from just outside Kwinana (S32.23419, E115.84290), all the way on up to Canning Bridge (S32.01063, E115.85504), this coming King's Birthday (WA) in order to raise funds for ongoing MND/ALS research.
Help me on my odyssey, so that we can move unceasingly to that closer to that singular day when a cure is eventually discovered, by donating even whatever little you can, or even planning on your own great 27km journey (or whatever else springs to mind, or even both!). If you can, please support me by making a donation to my fundraising page. Every dollar counts and all funds raised go to FightMND who are determined to fund vital MND research and help find a cure for MND, so that noone need suffer or die from this most horrid disease.

For further details, head on over to: https://hub.fightmnd.org.au/27-challenge-2023/the-dogbomb-walkers #MND #ALS #TheDogbombWalkers #27Challenge #27on27

https://www.abc.net.au/news/2023-08-24/motor-neurone-disease-research-funding-notifiable-disease/102731736 “Her family is one of many in #Griffith and other #Riverina towns tormented by the incurable disease, where some researchers estimate the rate of #MND to be five to seven times the national average.

After years of lobbying by the local community and the Member for Murray, Helen Dalton, the state government set aside $2 million in April to investigate a potential #cluster.”

Up very late packing... 🧳

I'll be off the air for two weeks, as I am travelling to Central Australia to participate in a fundraising trek for #MND Victoria

And then travel some more for a few days.

So hopefully I shall have some amazing #desert photos on my return.

In the meantime, it would be wonderful if some of you out there in the Fediverse could donate. The link is below.

Lots of Australians know the Fight MND franchise and their beanies. But did you know that the money goes predominantly into research? And making more beanies!!!!

(They have finally started to provide some donations to state organizations.)

State based organizations like MND Victoria have been around a lot longer, and their core business is to support people with MND and their families. Like us.

#ALS #Donate

Until There is Cure, There is Care

PS A blossom tree from yesterday's walk as a sign-off

https://www.mnd.org.au/my-fundraising/1319/walking-for-ian

Happy Friday folks! I’d like to give an extra, big thanks to @fightmnd for funding #GameOnWithMND MND Australia, administered by Perpetual Limited. It is a great opportunity to learn new, enjoyable ways to improve quality of life with #MND and through videogames. @KirstenHarley2 explains: https://www.youtube.com/watch?v=5IpU469sEVk&t=3s

We would not be able to virtually attend funerals...

#HashtagGames #LifeWithoutTheInternet

#MND #ALS #DisabilityRights
#AccessForAll #Accessibility

https://www.uow.edu.au/media/2023/uow-honours-the-legacy-of-professor-justin-yerbury-am.php

What an incredible man - vale #JustinYerbury, who was a #scientist and #researcher finding a cure for #MotorNeuroneDisease #MND

https://www.abc.net.au/news/2023-07-30/professor-justin-yerbury-dies-motor-neurone/102189500

Just a little under 2 months from now, I will be proceeding on a 27km (under 17 miles) walk from just outside Kwinana (S32.23419, E115.84290), all the way on up to Canning Bridge (S32.01063, E115.85504), this coming King's Birthday (WA) in order to raise funds for ongoing MND/ALS research.

Help me on my odyssey, so that we can move unceasingly to that closer to that singular day when a cure is eventually discovered, by donating even whatever little you can, or even planning on your own great 27km journey (or whatever else springs to mind, or even both!). If you can, please support me by making a donation to my fundraising page. Every dollar counts and all funds raised go to FightMND who are determined to fund vital MND research and help find a cure for MND, so that noone need suffer or die from this most horrid disease.

For further details, head on over to: https://hub.fightmnd.org.au/27-challenge-2022/the-dogbomb-walkers #MND #ALS #FightMND #27Challenge #27on27

From Nov. '22; still relevant. Interesting questions/thoughts — "Twitter, #Mastodon and the #Fediverse: I Have Questions" https://sogrady.org/2022/11/13/twitter-mastodon-and-the-fediverse-i-have-questions/

I saw it posted by @rabbinathan whose post discusses funding/economic issues (https://babka.social/@rabbinathan/110543026636375994). Blog author @sogrady discusses more. [NB: Search challenges on Mastodon often bug me, but it was pretty easy to find O'Grady in the fediverse. He's got a fun blog, too, & mentions the #ALS Association — #MND #ELA #SLA — so 👍 https://www.als.org/]

Just a little under 3 months from now, until I undertake a 27km (under 17 miles) walk from just outside Kwinana (S32.23419, E115.84290), all the way on up to Canning bridge (S32.01063, E115.85504), this coming King's Birthday (that's Septmber 25 to all you eastern staters ;). This one long stoat for a long stoat, is all in order to raise funds for ongoing MND research.

Help me on my odyssey, so that we can move unceasingly to that closer to that singular day when a cure is eventually discovered, by donating even whatever little you can, or planning about your own great 27km journey (or whatever springs to mind (or even both!), so that noone need suffer or die from this most horrid illness.

For further details, head on over to: https://hub.fightmnd.org.au/27-challenge-2022/the-dogbomb-walkers #MND #ALS #FightMND #27Challenge #27on27

A measly 10c donation for a $19.20 pork chop?

Fuck #Coles in the ear with a razor sharp penis. Just give all your donations towards #MND research directly.

🧬🔬Treatments for motor neuron disease (MND) are a step closer after @UQ_News say they identified a new drug target 🧠💪 Read more on Scimex: https://www.scimex.org/newsfeed/motorneurondiseasetreatmentsastepcloser 📰 #MND #neuroscience #research

Paul in Coronation Street has Motor Neurone Disease.

Paul's boyfriend Billy's an archdeacon in the Church of England.

I guess Paul will die before the severity of the disease afflicts him.

(#CoronationStreet #Corrie #England #English #British #UK #UnitedKingdom #soap #soapopera #MND #motorneuronedisease #LGBT #LGBTQ #LGBTQIA #Christianity #Christian #illness #death #grief #terminalillness #terminal #2023 #Europe #European #gay #men #gaymen #ChurchofEngland #CofE)

So much in this article:

“Unless the president of the United States would declare #Alzheimer's a national emergency … that, I’ve been told, is the only way this could be done.” — Alberto Ascherio

"Scientist who uncovered likely leading cause of MS (i.e., Epstein-Barr infection) wants to tackle #ALS next" https://www.statnews.com/2023/03/16/alberto-ascherio-multiple-sclerosis-als/

#MND #ELA #SLA #EBV

It's Mom's birthday today, in addition to the 3rd anniversary of pandemic lockdowns around here. Mom died seven years ago. Also my in-laws' 60th anniversary. Mom died the day after my folks' 60th anniversary, of #ALS #MND #ELA #SLA (same miserable disease, different languages). Dad was holding her hand. Don't tell me willpower isn't a real force.

Had a small celebration with my in-laws last night.

Life *is* complicated. Feeling it all, right now.

Good morning mastodons!. My father suffers from amyotrophic lateral sclerosis and I search the net for software for people with this disease that I can teach him how to use to communicate before it gets worse and harder to learn. There are quite a few and I don't know which is the least complicated or the best. Some guidance would be helpful, thanks🤗 #ALS #ELA #SLA #MND

Great to see this story out at MND Australia about barriers to the #NDIS for people living with #mnd and what can help make the NDIS easier to access. https://www.mndaustralia.org.au/articles/why-accurate-and-fair-ndis-eligibility-assessments-are-critical-for-human-rights-and-the-mnd-communi

@beaveinflow True words. Thanks for sharing. #ALS #MND #ELA #SLA — different initials, different countries, same awful disease — is terrible. Let's hope for progress on treatments soon.

@sdkstl Thanks for putting this here. Raw, honest writing.

I used to post about #ALS #MND #ELA #SLA (same awful disease as abbreviated in several different languages) on the other site. Have not found quite the same community here — yet. It will happen.