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.

On Thursday 11 July at 9pm, BBC 2 broadcast a programme  'Mad Cow Disease - the Great British Beef Scandal'.

 We watched this programme and these are our personal opinions.

Those involved with CJD, including the CJD Support Network, will never forget this time and the tragic loss of many young people, who died of vCJD.

We understand that the title  'Mad Cow Disease' is offensive and very upsetting to many families who have lost loved ones through this terrible disease. The CJD Support Network understand that the BBC were made aware of this, but decided to go ahead with the title.

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.

but if you haven't given yet, it is still not too late to donate to their Marathon funds !

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.

It was with much sadness that my wife lost a truly wonderful person, her sister Catherine, who very sadly became ill with Sporadic CJD, only diagnosed last year and just 51 years old. This was devastating to her Dear Husband, two wonderful sons, a Dear Brother, my Dear wife and Cath's Dear Sister now in Oz and of course many friends and other family members It was so painful seeing her and the family suffer with this quite devastating illness. It was truly heart-breaking. Catherine and the family battled til the last, when she sadly could hold on no more. But she left us with such dignity and grace, it was peaceful, with the family there with her.

Updated 28 Jan 2019 - In October 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.

Four Patients have now received this antibody treatment. Sadly the third patient, who had a very aggressive form of sporadic CJD, has  died as a result of their condition.

UCLH’s chief executive Professor Marcel Levi said: “On behalf of UCLH, I would like to offer my deepest condolences to the patient’s family and loved ones. They are in our thoughts at this difficult time.”

The fourth patient has just started treatment, whilst the other surviving patients, have not experienced any side effects to date.

Professor John Collinge, director of the MRC Prion Unit at UCL, said: “All of these patients were 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 full article on the UCLH website, please click here 

To see all News items, please click here