The CJD Support Network has been selected as a 'Core Participant' in the Infected Blood Enquiry

To find out more about the Inquiry please click here

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 The CJD Support Network 2019 Family Support Meeting was held on Friday 15th and Saturday 16th November, at the McDonalds Burlington Hotel, Birmingham.

This year we repeated the successful format of 2018:
On the Friday evening there was an informal reception followed by dinner. This gave more time for families to mix with other families, to meet and to share their CJD experiences and to talk to CJD experts in an informal setting. We were delighted that the majority of those who came to the meeting on Saturday, also came to the Friday evening get together and dinner.

The meeting  on Saturday followed our usual format of talks by professional experts and group discussions around questions asked by delegates.

Summaries of the talks given at the Family Support Meeting will be published in our 2020 Newsletter.

Between lunch and the afternoon session we held our AGM at which reports were presented and the 2019-20 Officers and committee elected.

The programme can be seen below.

John Barrett and Paulina Sutton ran for the CJD Support Network in the London Marathon on 28th April.

From the Network and from all the people their sponsorship donations will help in the future, our thanks go to both runners, for all their hard work training and their efforts on the day of the run. 

We would like to thank everyone who has donated to these London Marathon runners.

You can donate to John's fund by clicking here
or click here to visit Paulina's Just Giving page

You can also see further information below

John Barrett

Please sponsor John  for the CJD Support Network.
John was awarded our   "Silver Bond"  place in the London Marathon
on Sunday 28 April this year.

 John ran in memory of his wife's sister Catherine Francke and to raise money for the CJD Support Network. 

To donate, or view John's Just Giving page, please click here. The page will open in a new window.

Johnl welcomes all sponsorship donations, which will help the Network to continue to support patients, families and carers, affected by this terrible disease. Donations from the public is now the only source of income for the CJD Support Network

 John says, "Though this was  my 3rd London and my 5th Marathon, it's seven years since  my last  run at this crazy distance....arrghh.....so it'll be tough, but, I’m doing this for a great cause.

Updated 6 February 2020 - In 2018, University College London Hospital (UCLH) began treating a patient with Sporadic CJD, with the PRN100 drug, which has been developed by researchers at the Medical Research Council (MRC) Prion Unit, at University College London. This drug, which had not been used in humans before, was administered after a judge confirmed that although the drug is unlicenced, it was lawful and in the patient’s best interests for them to receive treatment.

The sixth patient has recently started  this antibody treatment.

In 2019, Professor John Collinge, Director of the MRC Prion Unit at UCL, said: “All of these patients have been at different stages of their disease when they began to receive the antibody. It is too early to determine if, or to what extent, the treatment has had an impact on their condition.”

To go to the latest update article on the UCLH website, please click here 

To see all News items, please click here