News and events
Follow our latest news and fundraising events
We have raised £1 million so far
Thanks to our generous supporters, this is a great start, but much more is needed to continue vital research and help to make a viable treatment. With your help, we can reach our target.
Photos from The Cure CJD Campaign's post ... See MoreSee Less
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We're taking the fight for a CJD Cure to Parliament.
CJD is a rare but devastating prion disease that takes lives fast, without mercy, and without a cure. We have the science, and a ready clinical trial phase II — now we need the funding.
This event is a turning point. We're building the momentum to raise £10 million for groundbreaking research – and it starts with awareness, with community, and with people like you.
Share this post. Tell someone about CJD and Prion Diseases. Help families and friends to rally support for this dreadful disease.
Click the link in our bio to know more and follow along stay informed about our activities during this important day and beyond.
#CureCJD #PRN100 ... See MoreSee Less
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Tomorrow, Sarah and Tim are cycling over 250 miles for our Campaign - a huge challenge!
Last year they watched their Mum rapidly decline with sporadic CureCJD and sadly pass. They both wanted to not only raise the awareness of the illness but also fundraise.
The cycle route covers locations that mean so much to the family. Commencing in Bridlington, through the Peaks to Sutton Coldfield, then Streetly and finally to Long Buckby.
Thank you from all us - it really is appreciated! Do keep us updated with you progress!
www.justgiving.com/page/sandtcjdbikeride ... See MoreSee Less
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A huge thank you to Lucas Coombs who is raising funds for our campaign by running the Windermere Marathon this weekend. A huge challenge!
Fatal Familial Insomnia (FFI) has heavily impacted the family, and they are keen to do all they can to support the CureCJD campaign.
Lucas’s father sadly died from the illness (pictured with Lucas) and several other family members have already lost their lives to the condition.
Lucas and his cousin stand a 50% chance of having the disease though as yet neither knows their fate .
Run well! Do lets us know how you get on and thank you again for all you are doing - it really is appreciated.
www.justgiving.com/page/sonia-coombs-1 ... See MoreSee Less
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We would like to extend our sincere thanks to everyone who attended the MRC Prion Unit at UCL and National Prion Clinic Open Day, which took place on 14th April 2026. The day was very successful with lots of debates and discussions.
It was a valuable opportunity to share updates, hear perspectives, and strengthen connections across our patient, professional, and wider stakeholder community.
For those who were unable to join us there is a newsletter which is a helpful summary of the day, including key discussions, research updates, and highlights from the programme.
To access please visit - www.ucl.ac.uk/brain-sciences/national-prion-clinic/events-2
Please feel free to send this on to anyone else who might be interested - to receive future updates and hear about upcoming events directly. ... See MoreSee Less
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Good luck to Lauren who is running the London Marathon this weekend. By her own admittance she is not runner and finds the prospect of 26.2 miles a huge challenge!
Lauren explains " I'm doing this to raise funds for the CureCJD campaign as the illness and cause is something which is so personal to me and extremely close to my heart"
"It has impacted so many of my close family members - even when the running hurts (and it will!) I will continue and do all I can to complete the marathon"
Thank you Lauren - we at the campaign are with you every step of the way - do keep us updated on how you get on and share some pictures from the day.
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Lauren’s fundraising page
tinyurl.com
Hi, I’m Lauren, and in April 2026 I’ll be taking on something I never thought I’d do – running the TCS London Marathon. Those who know me well will know I’m not a runner. The thought of 26.2...1 CommentsComment on Facebook
The CureCJD campaign are hosting a parliamentary reception Tuesday 7th July 1400 -1600 bringing together individuals and families who have experienced Creutzfeldt-Jakob disease (CJD)
We want all stakeholders to hear about MRC Prion Unit’s world-leading research demonstrating, through world leading science, the absolute desire to finally curing CJD.
Dr Zubir Ahmed MP, Minister for Health Innovation and Safety, has been invited to deliver the keynote address.
We have 100 guest slots available - if you would like to more information and register to attend please click on the link ... See MoreSee Less
Cure CJD Reception
rsvp.zkipster.com
The reception will bring together individuals and families who have experienced CJD first-hand, Cure CJD's researchers and supporters, policy experts and parliamentarians to demonstrate their unified ...0 CommentsComment on Facebook
Alex Ewin is taking on a big challenge whilst also fundraising for our campaign.
Not content with running the London marathon later this month he is also taking part in Berlin in September!
Alex explains "My dad was diagnosed with CJD in February 2025 and passed a few months later. As you can imagine for the family it was a very difficult time.
I'm really keen to do all I can to help find a cure and support the work of the scientists within the prion unit"
Go well in London Alex! Thank you for everything you are doing and do keep us updated on both events.
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London and Berlin Marathons for Dad and Cure CJD
shorturl.at
Help Alex Ewin raise money to support University College London Hospitals Charity UK1 CommentsComment on Facebook
A huge thank you to Finlay who is currently "in training" for the 2026 London Marathon.
He will be running and fundraising in memory of his Grandma who sadly passed away from CJD.
His preparation is going extremely well as he builds up to the big day at the end of the month!
Finlay please do keep us updated on how you get on and thank you again from all of us at the Campaign.
Run well! ... See MoreSee Less
Help me raise money for Creutzfeldt-Jakob disease (CJD)
2026tcslondonmarathon.enthuse.com
On April 26th 2026 I will be running the London Marathon to raise money for Creutzfeldt–Jakob disease (CJD), a cause that is very close to my heart. I chose to support this charity in memory of my G...1 CommentsComment on Facebook