Mum of 4, educator, diagnosed with MND Sept 2021. retired through ill health, Raising MND awareness through humour (sometimes dark) with my blog.
Joined April 2013
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I trust #MNDoddie to walk the walk not just talk the talk #mndnotincurablejustunderfunded
Today to mark Doddie's 56th birthday, we're reflecting on hope in the research landscape and what we are doing to accelerate progress. Together, with your help, we're carrying his legacy forward.
Read 'How close are we to a cure?' below 👇
myname5doddie.co.uk/news-and…
Please have a look at my blog post and share.
Attention = Action
mndjourney.wordpress.com/202…
Thank you 😊
A new blog post for those who access on here. Thank you for reading 😊 mndjourney.wordpress.com/202…
New blog post for those that like to access on here. Thanks for reading 😊 mndjourney.wordpress.com/202…
Anybody who is sod-1 and having difficulty accessing Tofersen please read this below and use contact information. Thank you @MNDoddie5 for supporting our community with decisive actions. 💛💙
We’ve been looking urgently into how we can help improve access to tofersen for people living with SOD1-MND in the UK. Too many are still prevented from accessing this life-extending treatment, and that must change.
Read what we’re doing to help fix this: myname5doddie.co.uk/whats-on…
We need to be ready for new drugs that are effective. Gvmnt is lazy, NICE isn’t fit for purpose, & our main charity is focused on ‘responsibility’ rather than 18 plwMND & a massive health inequality. You couldn’t write this chain of events
Imagine if it was you.Please read&share
A new blog post for those who like to access from here. It’s been a while! Thanks in advance for reading 😊
mndjourney.wordpress.com/202…
That’s a wrap for #DoddieAID
Thank you all those that joined in.
Huge thanks for all generous donations.
Team distance 1,753miles
Total raised - £1,340.00
I’ve started the year knowing what a brilliant bunch of people I’m surrounded by & it means the world.
Same time next year?
A new blog post for those who like to access from here. It’s been a while! Thanks in advance for reading 😊
mndjourney.wordpress.com/202…
Jennie Starkey retweeted
It’s just under a week since @blandy_r handed compassionate petition & open letter into No.10. Rachel ready to meet @wesstreeting @Keir_Starmer at your convenience. UK patients being denied a significant effective treatment for SOD1 #MND gene cases. @burrow_geoff @ClaireRyanBBC
Read Dr Rachel Jakeman’s @blandy_r emotional open letter to @Keir_Starmer & @wesstreeting about the post code lottery access of tofersen for SOD1 #mnd for Lillia. Let’s hope that @GOVUK intervenes ASAP to resolve this emerging scandal.
united2endmnd.org/2026/01/29…
#DoddieAID
End is in sight & I’m quite looking forward to it!Finally caught up with Victoria who due to geography hasn’t joined group walks. Final walk&chat for Team Starkey Stompers today. Combined team distance 1,525 miles
Justgiving total £840
justgiving.com/page/jennifer…
#DoddieAID day 26-28
Peak District walks, hydrotherapy at Keech Hospice & a few steps in London to support DrRachel Jakeman & family with their Tofersen campaign.
Starkey Stompers mileage - 1,407
Justgiving total £840
Thank you for your kind donations
justgiving.com/page/jennifer…
#DoddieAID
Terrain a lot of water/mud & stiles. That highlighted my right leg is no longer a reliable weight bearer. Thankfully no injuries. A progression that I can deal with. Most don’t get the chance to strategise.
Team combined distance 1,261 miles
justgiving.com/page/jennifer…
#DoddieAID
Pants weather & energy, sloth like Mon/Tues, resorted to weighted hula hoop, I moved & that’s what counts.
Photos from late this afternoon, waterlogged muddy field, 3 ladies, a dog, 2 head torches & 2 blurred photos.
#atleastwearelaughing
justgiving.com/page/jennifer…
Imagine being diagnosed with a treatable disease, then to be told you can’t have the treatment!
Lillias friends and family are walking from Southampton on Friday 23rd and arriving in Westminster on Wednesday 28th to deliver this petition. Please support c.org/vdnsdRVBQJ
#DoddieAID
better week.
Less cold, joints less rusty & heavy.
2 weekday walking partners, lovely Sunday group walk.
Starkey Stompers combined distance - 920miles
Justgiving total - £735
I really do have a great bunch of friends & family ❤️
justgiving.com/page/jennifer…
#DoddieAID
Weather warmed & so has my mood!
Local walks, hydrotherapy @KeechHospice, walk on Downs. Found new accessibility friendly path, good to know, great den area for kids/those who are big kids.
Doddie tartan selfie.
Team Starkey Stompers 668miles
lnkd.in/e4XqQFxi
#DoddieAID (1/3)
Not going to pretend that I’m enjoying it this year folks. Symptoms have progressed to the point where my muscles are weak. By the time I’ve summoned muscle strength to push my right foot into my hiking boot, I’m wondering how much energy I’ve left to walk.
2/3 - Couple that with cold temp which exacerbates muscle weariness, & it’s a character test. Every step is for those with MND who can’t take a step. I’ve just had a moan, I will also add that I’m a very lucky lady to be here 4.5 year after diagnosis. A vast percentage aren’t.
3/3
I’ve mostly walked locally last few days, and not that far, but I’ve walked…also hula-hooped! Today was our Starkey Stomper and friends group walk, which lightened the spirits somewhat 😊
Team of 13 lovelies are at a combined 482miles.
justgiving.com/page/jennifer…