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.
On July 7th, the Cure CJD Campaign hosted an event in Parliament to raise awareness of efforts to find a cure for CJD and other prion diseases.
Ed Sawyer, our political director, lost his father to Creutzfeldt-Jakob disease just one week after diagnosis. He spoke about watching his father decline rapidly, and the confusion and uncertainty that came with it.
"It's a difficult feeling watching your loved one slip away. The person you know and love being taken piece by piece by a disease that you can barely understand."
Ed's message was one of hope. He highlighted the tireless work of Professor John Collinge and his team at the MRC Prion Unit, UCL, who have spent decades fighting for this disease.
Their groundbreaking antibody treatment, PRN100, has shown seriously promising results. It could hold potential not just for treating CJD, but for advancing research into other prion diseases such as Alzheimer's and dementia too.
Phase 1 of the clinical trial took place in 2020. Now, Phase 2 needs £10,000,000 in funding to move forward.
"Let's raise awareness. Not just for those of us who live with the scars of CJD. But for those who can't be here with us."
Help us raise the £10,000,000 needed to take PRN100 to the next stage, drop us a follow to learn more 💙
You can help support the campaign directly here:
www.justgiving.com/campaign/curecjd
#CureCJD #PrionDisease #MedicalResearch #RareDisease ... See MoreSee Less
0 CommentsComment on Facebook
Gerstmann-Sträussler-Scheinker (GSS) is a rare, fatal, and inherited prion disease caused by a mutation in the prion protein gene. Unlike other prion diseases, GSS often strikes that bit earlier. Typically affecting people in their 40s, and it typically progresses slowly over many years.
For one family in particular, this is very much the reality.
Sophie, Vince, Josh, Kitty, and Craig share a family tree heavily impacted by GSS. Many members of their family tree live at risk of inheriting this fatal condition.
Funding for experimental treatments like PRN100 isn't just about science. This funding is a vital lifeline for families fighting for a cure - for those who’ve passed, for those at risk, and for future generations to come 🧬💡
To learn more about the Eave’s story and how to help fundraise, make sure to follow our page and help #CureCJD.
#GerstmannStrausslerScheinker #PrionDisease #RareDisease ... See MoreSee Less
0 CommentsComment on Facebook
Some of you may know John if you already follow the CureCJD Campaign across social media 💙 If not, we’d love to introduce you!
John, like many involved with the campaign, have been directly impacted by prion diseases in one way or another. For John, a form of inherited prion disease called GSS (Gerstmann-Sträussler-Scheinker disease) has devastated his family.
The disease has affected 5 of his family members directly, including his sister Diana, a loss that no family should have to endure. John himself tested negative for carrying genetic variant of the disease, but actively involves himself in fundraising and advocating for PRN100 - a potential antibody treatment that researchers hope could help prevent the disease in future generations.
To read more of John and Diana’s story, tap the link below!💙📰
www.express.co.uk/life-style/health/2230708/a-brain-disease-killed-5
#CURECJD #PrionDisease #GSS #gerstmannstrausslerscheinkerdisease #CreutzfeldtJakobDisease ... See MoreSee Less
0 CommentsComment on Facebook
Creutzfeldt-Jakob Disease (CJD) is a rare, rapidly progressive brain disease that currently has no cure. For those diagnosed, time is incredibly precious.
Contrary to popular belief, Prion Diseases are not exactly 1 in a million. The lifetime risk of developing a Prion Disease is 1 in 5000. Which is why conversations like this one are so incredibly important.
At the beginning of July, individuals affected by the disease, researchers, and members of parliament gathered together for a few hours of connection, education and hope.
Professor Simon Mead from the MRC Prion Clinic in London explains why PRN100 represents a real opportunity to advance CJD research. But without critical funding, the clinical trial needed to prove whether it works cannot move forward.
Every breakthrough in medicine starts with giving research the chance to be tested. By raising awareness, sharing this story, and supporting the campaign, you're helping bring us one step closer to that opportunity.
#CURECJD #prn100 #MedicalResearch #raredisease #PrionDisease ... See MoreSee Less
5 CommentsComment on Facebook
Photos from The Cure CJD Campaign's post ... See MoreSee Less
0 CommentsComment on Facebook
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
0 CommentsComment on Facebook
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
2 CommentsComment on Facebook
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
4 CommentsComment on Facebook
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
0 CommentsComment on Facebook