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.
🧬 The non-profit Cure CJD Campaign launches an international fundraising effort to raise £9 million (€10.2 million) to fund the Phase II clinical trial of #prn100 — the most promising treatment ever developed for prion diseases, a group of rare, fatal and currently incurable neurodegenerative disorders. Read the full Press Release:
🔗 curecjd.org/wp-content/uploads/2025/11/Press-Release-Cure-CJD-Campaign-12-Nov-Prion-Day.pdf
#CJD #PrionDiseases #prn100 #clinicaltrials #Alzheimer
#parkinson Chicago Med ... See MoreSee Less
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PRN100 in video: www.youtube.com/watch?v=TUOjY8Ilnb8&t=10s
#PrionDisease
#ChicagoMED
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On the 12th November, I will be completing a 16 mile walk for Prion Diseases Awareness Day. I know it is not much for now, but I will be planning much more to fundraise in the future.
As well as doing this in an attempt to show my support to the individuals and families who are affected by CJD, we are also doing this in memory of my Grandma, Jennifer Sagi, who unfortunately passed away due to CJD.
Any donations that can be made towards The Cure CJD Campaign will be greatly appreciated, as I know from personal experience how heartbreaking this disease can be.
The Cure CJD Campaign
curecjd.org/support-us/donate/ ... See MoreSee Less
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In one week, it’s International Awareness Day for CJD and prion diseases. Let’s keep raising awareness and supporting research toward an effective treatment. ... See MoreSee Less
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Emma Jackson and her family are fundraising in memory of their beloved mother Sharon who passed from sporadic CJD aged 54. The family completed the epic challenge of walking up Snowden raising an amazing amount of money.
The family were keen to share their story and further support the campaign by raising both funds and awareness of CJD.
tinyurl.com/mstz2vdv
Sharon’s Story
Sharon was lead an active and health life working as dedicated dental receptionist. She was well-known in her local community sharing 24 beautiful years of marriage with her husband Darren, and together they raised four wonderful children: Emma, Nicole, Kate, and Ryan.
In March 2024, Sharon was struggling to concentrate and feeling generally unwell. After a visit to her GP, she was told she was experiencing symptoms of menopause and was prescribed HRT (hormone replacement therapy), with the reassurance that she might feel worse before things improved.
But by April and May, Sharon’s condition hadn’t improved — in fact, it worsened. She began experiencing troubling balance issues and overwhelming fatigue.
Concerned, her daughters encouraged her to seek further medical advice. Sharon was then prescribed medication for what was assumed to be an inner ear infection. But the medication made her feel even worse, so she stopped taking it.
By late June and early July, Sharon was increasingly unsteady on her feet and began to suffer falls. Her daughters took her to A&E. Despite their concern, all her tests came back clear, and Sharon was sent home with no answers.
By the end of August, Sharon was sleeping most of the day and could barely take a few steps without falling. Her daughters took her back to hospital - it was clear this was not something normal or minor.
After a week of tests and uncertainty, doctors admitted she was a “medical mystery.” Eventually, with the help of a video call from a CJD specialist based in Edinburgh she was diagnosed with sporadic CJD.
There were no treatment options. Doctors told the family she had only weeks to live. Sharon was moved to a local care home to ensure she was comfortable and surrounded by her loved ones.
Sharon passed away on early October just weeks after receiving her diagnosis.
She leaves behind not only her loving husband and children, but a legacy of warmth, strength, and resilience.
She is deeply missed — always loved, never forgotten. ... See MoreSee Less
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If you are in the London area this Saturday do pop along and join Tom Buckland who is hosting a fundraising event for The Cure CJD Campaign.
The event will be hosted at the Eel Pie pub in Twickenham and start at 7.30pm.
On the evening, there will be live music from Nathan Baverstock, a buffet of hot bar snacks plus a raffle.
For further details www.justgiving.com/page/buckland1 ... See MoreSee Less
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If you would like to attend the MRC Prion Unit Open Day at UCL on Tuesday 8th April 2025, please contact Rowena Baker, National Prion Clinic, tel. 0207 679 5036 or email r.*****@**********ac.uk ... See MoreSee Less
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Today is Rare Disease Day 2025 and the CureCJD Campaign will continue to promote this wonderful initiative.
It’s a reminder that rare diseases touch more lives, involve more conditions, and require more action than most people realise.
More than 300 million people worldwide live with a rare disease – equivalent to the population of the world’s third-largest country. That’s 5% of the global population, yet most people struggle to name even a few rare diseases.
CJD is one of those diseases and we will support and fundraise until a cure is found.
#RareDiseaseDay2025 ... See MoreSee Less
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Please do read this article from the BBC - all publicity is really helpful in our objective to raise awareness of CJD and our desire to find a cure.
The article references CJD Support Network UK and Professor Simon Mead, both of whom we work very closely with. ... See MoreSee Less
Sporadic CJD: 'By the time it was confirmed it was too late'
www.bbc.co.uk
Michelle, from Bournemouth, died two months after she was diagnosed with the fatal brain disease.1 CommentsComment on Facebook