Jayne Harler
@dfc4ever
Early retired civil servant.Married to Graham, wife, mother, grandmother.Mother of a recently diagnosed MND warrior 2022. Supporter of Dartford FC.
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⭐️ Insurance Times Awards 2025 - Positive Impact Award ⭐️ #motorneuronedisease #disability #samandthebucketlist #ITAwards #ITA25 #UKGI
Lewis Moody’s MND news brought pain rushing back — it is time for action Kathy Weir, writing exclusively in the Sunday Times this weekend 👇🏻 thetimes.com/article/42c3ee…
⭐️ MND: The Club You Don’t Want To Join - available for purchase NOW! ⭐️ Today, I achieve my bucket list dream of becoming a self-published author. It’s available on Amazon worldwide, and I’ve shared a link so you can grab yours. amzn.eu/d/19aR2JW
Operation Mincemeat 19.05.25 Totally loved a night at the theatre watching the new cast of @mincemeatlive. It’s been a long time since I cried during a show and it was outrageously funny but also very moving. Thanks also to the access team for looking after me.
Well worth a read.
New Blog post for anyone still reading my ramblings 😊👍 #MND #ALS #TerminalIllness #Blog bit.ly/41BO8dz
"Has your wheelchair been crash-tested?” "Well, I've not crashed it yet”, I replied. "That is NOT what I asked”. Don’t think the operator approved of my humour... 🤷
This. On repeat. All week 🔁🔁🔁 Follow us on TikTok: vm.tiktok.com/ZNdjxBvvC/ #edit #nonleague #UpTheDarts #playoffs
Caller to @lbc this morning 'If Stephen Hawkins could work then why can't everyone, afterall he couldn't use his arms, legs or speak' Who do these people they think dressed Hawkin, fed & washed him, cooked his foods, cleaned his house, got him into his chair & drove him to work?
Thanks to our garden makeover, the council FINALLY fitting a level access door & some sunshine… I spent most of my weekend outdoors being protected by my mate. I may have enjoyed an Espresso Martini & used the elevate function to spy on the neighbours. Too early for the Speedos?
3 Y E A R S 🎈 I have learnt valuable lessons, made new friends, lost old ones & have embraced new beginnings. It may seem odd to some to celebrate this milestone but I never expected to be here still. I don’t know how many more of these I’ll get, so I’m celebrating every win.
Finally... a year of waiting for the council to adapt the wetroom and works are now complete. Just enjoyed my very first shower, followed by a full length body dryer.
We were so pleased to have Sam speak at our Kent & Medway MND Roundtable in June. His words were inspirational, educational and deeply moving. Thank you, Sam.
Please repost for all the paramedics and ambulance staff who are working this evening We really could not be more grateful you are out there
For the first time in 2 years, I fed myself dinner! Thanks to modern technology I controlled ‘Obi’ using two foot pedals. MND takes so much, but it won’t take that away from me.
Please sign this petition for @MNDPatients with the SOD1 gene variant. Absolutely crucial for them, but also to get authorities "thinking properly" about potential personalised treatments being studied for various genes @MNDwestsussex @mndawss @westsurreymnda @MNDAEastKent
Tofersen is an effective new treatment for those with the SOD1 genetic variant of motor neurone disease. It works. It can slow progression of their #MND. Join the community and call for NICE to make an exception to its normal criteria. Sign our petition below. #PrescribeLife
Thank you for the update @mndassoc. I find it extraordinary that Iltoo are finding the time to submit patent applications but two years after the trial ended, cannot release the data despite the trial being funded entirely by taxpayers and charities. It is a SCANDAL!
We have just released a new statement addressing MIROCALS. Read the full statement here. mndassociation.org/media/latest-n…
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