janine culshaw

RIP Rob Burrows. What an amazing man

@mndassoc @BowdonRugby I would love to go. I am a rugby fan but also have been struck by this cruel disease. Raising awareness and funding is necessary.

Want to meet Kevin Sinfield 𝘢𝘯𝘥 raise money for people affected by #MND? @BowdonRugby are hosting a fantastic one of a kind event and tickets are on sale now. Contact buckley@exchangechambers.co.uk to secure your place 🧡

@alexwardfund @flymylove @mndassoc @MNDAEastKent @mndresearch @MNDoddie5 @MNDPatients @APPGonMND @AlfDubs @mndcampaigns He was far too young. You have a great photo he was a handsome young man. My thoughts are with you. Xx

Today our amazing, kind and gorgeous son Alex would have been 35. We lost him on July 22nd, 2020 to a brutal, aggressive form of #MND. We were so lucky to have had him in our lives for 31 wonderful years. We need to do everything to stop this disease taking more precious lives.

We are asking @MNDpatients & supporters to email their MP to ensure the patient voice is heard at @APPGonMND next Weds. Our statement & template message here united2endmnd.org/2024/03/06/acc… Pls read to find out more. @DHSCmedia @NIHRresearch @VictoriaAtkins @BBCBreakfast @joncoates73

Today is the first day my rib pain has slightly eased. Bruised ribs are extremely painful.

@Jaynes__World Rest in peace. You’re smile and attitude made it easier to deal with MND. Xx

Fly free, Sir John of #Droitwich ⚔️ you will be missed.... 😢 #MND #MoreNeedsDoing

@ALSWARRIORSA It is terrifying you just can’t breathe or talk. I can’t talk anymore I just grunt at people. When it happened to me my 21 year old son saved me.

The last four days have been the most frightening I and my loved ones have ever experienced. It started with choking on phlegm on Saturday night with being unable to tell anyone what the problem was. My blood pressure and heart spiked as I panicked and I needed to be sedated.

@kevwgs Absolutely

Anyone else think it sounds like Paddy McGuiness says "f*cking geniuses" rather than "booking geniuses" on the On The Beach Advert? 😂 #MaskedSingerUK

@ALSWARRIORSA I find I grind my teeth. I can’t talk either. MND takes the p

Okay #MND, you’ve made your point. You’ve taken me from walking out of hospital with my diagnosis in March ‘23 to unable to speak and completely bedridden in September’23. Now, I have jaw muscle shortening. You’re robbing me of my smile!? Can we tone it down a bit, please?

@StarkeyJennie It’s awful Jennie. I feel MND is still looked upon as a death sentence. This week the District Nurse and a doctor asked about my plans. I reply to stay alive. They wanted me to have a hospital bed. I’m still mobile and my bed is fine. I don’t need personal care.

Let’s be like the scouts & BE PREPARED it’s all in the timing & #mndpatients can hear the months ticking by. Please can we get in the blocks ready for the starting pistol? We’ve got a race to win - 1st prize is more time with our loved ones #Proleukin #iltoopharma #mirocals trial

Do one MND

@MinoSean I’m desperation I traveled abroad for stem cell therapy. Not cheap.

Is it just me who hears that somewhere is "raising #ALS awareness" and automatically assumes that next to nothing is being gained?

@ObispoSouth @limpbroozkit I’ve had seven falls now. Three concussions on the same side and area of my head. It is worrying but I’m very stubborn.

Why won’t ILTOO publish the results?