Marking 45 years 💙
Thank you to everyone who has lovingly shown myself, my family and MND Scotland support through fundraising... It really means so much! CCKK xXx
https://t.co/VJHE1Yacl1
I've asked my MP to meet with the MND Association this spring, to discuss how they can help constituents living with #MND in my local area. Can you take 1 minute to email your MP too? 💙
https://t.co/TtL1cfxrqC
The cross‑party APPG on MND brings MPs and Peers together to push for better support for people with MND.
Their next meeting will focus on the barriers stopping people from accessing vital MND treatments.
Your MP needs to be there.
Email them today and urge them to attend.
Thank you @MNDoddie5 for supporting our community and doing what others have refused 💙💛 If you or someone you know is living with #sod1#mnd and are having difficulty accessing #tofersen treatment, please reach out to the contacts below! The #journeyofhope continues...
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: https://t.co/MnASAQTgzt
It is completely unacceptable that the drug, tofersen, is only being given to some of those who are eligible to receive it. Read our statement to find out more.
https://t.co/ihGpjpRL6A
Wishing the best of luck to Kevin Sinfield CBE and his team as they kick off their 7 in 7: Together challenge today! 🏃 🏉
➡️ Join us in Dundee this Saturday: https://t.co/Tg0iCRPv7B
The last of the September celebrations today as these two turn 1️⃣6️⃣!! Our lives are twice as bright and defo filled with double the love 💕 You are both amazing and talented in your own ways, with a bond most will never experience and we are so proud of all you have become 🥳 xXx
🎂 E I G H T E E N 🎂
The first baby.
My built-in bestie.
The one who gave me purpose.
She is me, yet she is entirely her own. A reflection of my past with a future brighter than I dared to hope for. We are so proud of everything you are CJ Scott 🩷
HAPPY BIRTHDAY to you! xXx
Visiting Chester to accompany this wee superstar to The @RankFoundation event for young people identified with exceptional leadership potential by their head teachers 🤩 so proud of you kiddo @kaylascott2929
This wee beauty is airport bound for her first girly holiday 💓 Hope you all have the best time in Maga! Stay safe and look after each other... regular check-in's please 😘 love you!
Couldn't be any prouder on exam results day... well done Casey, Kole and Kayla for your achievements despite everything. You are all individually gifted with qualities and talent that exams can't measure but one thing you all share is resilience! Keep being amazing 🥰 xXx
The @MHRAgovuk has granted marketing authorisation for tofersen, a new drug for the treatment of SOD1 MND.
Alongside @mndassoc and @MNDScotland, we welcome the approval of the first treatment for MND in the UK in over 30 years.
Full statement below 👇
https://t.co/V2bj107qwo
Tofersen, the drug which treats SOD1 MND, has been approved by the MHRA - meaning it is now licensed for use in the UK.
While we welcome this news, tofersen still needs to be made available for use by the NHS to all who need it.
Read more here 👉 https://t.co/o8Duxsa9ep
#MND
The @MHRAgovuk has granted marketing authorisation for tofersen, a new drug for the treatment of SOD1 MND. @MNDScotland, @mndassoc and @MNDoddie5, welcomes the approval of the first treatment for MND in the UK in over 30 years: https://t.co/nzFz4z5ZYF
There are now 20 fellow #SOD1 mnd warriors who can't access the same life-extending drug #tofersen that I receive due to the EAP reaching capacity.
We are urging the government to intervene, ensuring no one misses out on this vital treatment due to NHS resource constraints!
We’ve brought over 20,000 voices to Westminster today. Our #PrescribeLife petition urges the Government to make #tofersen accessible for everyone living with SOD1 #MND.
People with SOD1 MND don’t have time to wait #PrescribeLife.
Thanks to your support, we are close to reaching 20,000 signatures! #PrescribeLife#tofersen
Sign our petition to help people living with SOD1 #MND access a life-changing treatment 👇
https://t.co/IiCfNq25MM
Our #PrescribeLife petition has reached an incredible 10,000 signatures! 🎉
A massive thank you to everyone who has supported the push to make sure everyone with SOD1 #MND can access #tofersen.
Let's keep the momentum going!
https://t.co/K3cr7nV5oD
Our Director of Engagement, Richard Evans, spoke with Sky News earlier about access to tofersen for those with the SOD1 variant of MND.
He was joined by Seckin, who has #MND and has been told she can’t have tofersen due to NHS resource constraints.
This is simply unacceptable.