We are proud to stand with international CJD and prion disease support organisations today, 12th November, International CJD Awareness Day. We will be sharing posts on Facebook and X throughout the day. In the morning we will focus on what prion diseases are, and the impact they have, along with our international organisation friends. Over the day we will go on to share family stories, information about research, and fundraising legacies.
At 11am we launched our 2025 International Awareness Day video via a Youtube Premiere. We were joined by several members of the community to watch this together for the first time. Thank you to everyone who has been kind enough to share a photo of their loved one for inclusion.
This week Barking, Havering and Redbridge University Hospitals Trust as Deputy Matron Charlotte Lowe, Senior Staff Nurse Marie (Lead Nurse for CJD in Theatres) and Dominique Higgins (Theatre Education lead) have been working to raise awareness of CJD amongst Theatre staff. The CJD Support Network has worked with them to produce publicity materials suitable for their audience including sharing real life stories, QR code reference posters signposting to further information, and helping colleagues consider how to approach the question on pre-operative forms that usually reads, “Have you ever been notified that you are at increased risk of CJD for public health purposes?”. An information point has been created, and information has been posted out information to the entire Trust via their internal electronic communication hub. We are delighted to have been able to support their efforts to raise awareness amongst medical professionals. We are always happy to help individual hospitals and NHS Trusts to do the same.
In events happening today: Sandra, with Louise, are holding a fundraising day including a darts tournament in memory of her beloved husband, John. John experienced Sporadic CJD and passed away in July of this year. We will be sharing some of the other incredible ways families and friends are creating fundraising legacies for their loved ones.
Posts will be tagged #cjdawareness and #priondiseaseawareness across all participating organisations and social media platforms to make finding them as easy as possible. We do hope you are able to join us in sharing and reposting to raise awareness, but understand if you may also wish to mute these tags, depending on how today finds you.
