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
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.
Well done to Serena and her friends (Bob, Fraser, Charlie, Rowan, Stasia and Morganna) who completed the half marathon and are now extremely close to their target of £3,000 raised for the campaign!
From the photos is looked like everyone was having so much fun!
Thank you again - it really is appreciated and really will make a difference.
A huge "thank you" to Rae who ran the Cheltenham 5k park run last weekend and raised £555 for our campaign .
This is in honour of her dear friend Hilary Millington who died in April 2023 from Sporadic CJD. (The badge in the picture was one of her many sayings!)
She is determined to help us find a cure through her fundraising efforts in memory of Hilary.
A huge "shout out" to Fraser, Charlie, Rowan, Stasia, Morganna and Serena Hill who are taking part in the Venice half and full Marathon at the end of October
Running and raising funds in memory of Andy Hill, a wonderful father who sadly passed from 3 years ago from CJD. He had a huge enthusiasm for the outdoors keeping active through walking, cycling and travelling and living life to its fullest.
The team are determined to make Andy proud through their wonderful efforts and continue to raise the awareness of the CureCJD campaign and help to one-day, fund a cure.
As part of their 'Week of Walking’ 400-mile fundraising last Friday saw the team at Goodrich alongside their family, four-legged friends, clients, consultants, and contractors take on a 10-mile walk across the South Northamptonshire countryside to raise awareness of The Cure CJD Campaign.
Starting from Sulgrave Manor, they set off across the beautiful countryside towards Moreton Pinkney, and onto Eydon Village Hall where we enjoyed a much needed light lunch together before setting off back to Sulgrave.
Thankfully, the weather was on-side, and had a fantastic turnout for the day!
Leckie Waterhouse, Associate at Goodrich,was diagnosed with inherited prion disease (GSS) His genetic mutation, E146G, has never been seen before and is being reported worldwide with a rarity value that cannot be measured in the recognised statistics for the disease.
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.
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
1 CommentsComment on Facebook
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
0 CommentsComment on Facebook
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
Well done to Serena and her friends (Bob, Fraser, Charlie, Rowan, Stasia and Morganna) who completed the half marathon and are now extremely close to their target of £3,000 raised for the campaign!
From the photos is looked like everyone was having so much fun!
Thank you again - it really is appreciated and really will make a difference.
www.justgiving.com/page/venicemarathon-cjd-1724007197034?utm_term=eaAE2zJya ... See MoreSee Less
1 CommentsComment on Facebook
Today is International CJD Awareness Day.
We remember all of our loved ones who have passed from this cruel disease.
We celebrate and cherish their memory.
We remember the good times and how they enhanced our lives.
We will continue to raise the awareness of CJD and do all we can to help find a cure.
We will never, ever forget.
#internationalcjdawarenessday
The Cure CJD Campaign
CJD Support Network UK ... See MoreSee Less
0 CommentsComment on Facebook
We recently sent out our first newsletter - hopefully you liked it!
You would have been sent it if you are signed up to receive communications from the CureCJD campaign.
If not , please do visit www.curecjd.org scroll to the bottom of the page and complete the subscribe form. ... See MoreSee Less
0 CommentsComment on Facebook
A huge "thank you" to Rae who ran the Cheltenham 5k park run last weekend and raised £555 for our campaign .
This is in honour of her dear friend Hilary Millington who died in April 2023 from Sporadic CJD. (The badge in the picture was one of her many sayings!)
She is determined to help us find a cure through her fundraising efforts in memory of Hilary.
www.justgiving.com/page/r-piff-1727588076859 ... See MoreSee Less
3 CommentsComment on Facebook
A huge "shout out" to Fraser, Charlie, Rowan, Stasia, Morganna and Serena Hill who are taking part in the Venice half and full Marathon at the end of October
Running and raising funds in memory of Andy Hill, a wonderful father who sadly passed from 3 years ago from CJD. He had a huge enthusiasm for the outdoors keeping active through walking, cycling and travelling and living life to its fullest.
The team are determined to make Andy proud through their wonderful efforts and continue to raise the awareness of the CureCJD campaign and help to one-day, fund a cure.
www.justgiving.com/page/venicemarathon-cjd-1724007197034?utm_term=eaAE2zJya ... See MoreSee Less
0 CommentsComment on Facebook
As part of their 'Week of Walking’ 400-mile fundraising last Friday saw the team at Goodrich alongside their family, four-legged friends, clients, consultants, and contractors take on a 10-mile walk across the South Northamptonshire countryside to raise awareness of The Cure CJD Campaign.
Starting from Sulgrave Manor, they set off across the beautiful countryside towards Moreton Pinkney, and onto Eydon Village Hall where we enjoyed a much needed light lunch together before setting off back to Sulgrave.
Thankfully, the weather was on-side, and had a fantastic turnout for the day!
Leckie Waterhouse, Associate at Goodrich,was diagnosed with inherited prion disease (GSS) His genetic mutation, E146G, has never been seen before and is being reported worldwide with a rarity value that cannot be measured in the recognised statistics for the disease.
🎥 You can find out more about Leckie and his story here – www.goodrichllp.com/cure-cjd-campaign/
Thank you for all you are doing - it really is appreciated and will make a difference. ... See MoreSee Less
0 CommentsComment on Facebook