As you may be aware, the 12th November is International CJD Awareness Day. A day when members of the prion disease community around the world come together to raise awareness of CJD and prion diseases, highlight the available support and recognise ongoing research.
We encourage our UK community members to share the below messages and graphics with their own social media networks, or share our Facebook and X (Formerly twitter) social media posts on the day. Don’t forget to add the the following hashtags to any posts:
#CJDAwareness
#PrionDiseaseAwareness
Click HERE to download a folder containing all our International Awareness Day graphic resources.
Infographic developed and provided by the CJD International Support Alliance click HERE to download.
CJD Support Network suggested text/graphics for social media posts:
Suggestion 1:
Today is International CJD Awareness Day (12th November) CJD is a prion disease. I am raising awareness because [insert information about your connection to prion disease e.g. My family are affected by the prion disease GSS // I lost my mum to sporadic CJD etc.]
Suggestion 2:
What do you know about Creutzfeldt–Jakob disease (CJD)/Prion diseases?
Normal prion proteins are found on the surface of everyone’s brain cells. Prion disease starts when these normal proteins misfold and build up in the brain, causing damage.
CJD and prion diseases are rare, progressive and currently always fatal, with no existing treatments. The initial symptoms vary depending on the area of the brain affected first, but can include mood changes, sleep disturbance, dizziness, unsteadiness, and forgetfulness.
Prion diseases can be sporadic, inherited, and in specific circumstances have been acquired.
Sporadic CJD is the most common prion disease, it progresses rapidly and seems to happen at random, usually between ages 45-75. Visit www.cjdsupport.co.uk/fact-sheets for more info on different forms of prion disease.
Suggestion 3:
The CJD Support Network is a resource for people affected by and at risk of all forms of prion disease in the UK. They offer telephone support, peer support groups, online and in person meetings, caring grants and answer questions: www.cjdsupport.co.uk
The CJD Support Network is the only UK charity dedicated to supporting the prion disease community. They understand and are there to listen. Contact via email on [email protected] or call our helpline on 0800 774 7317 (8am-6pm Tue & Fri).
To read about real world experiences of CJD and prion disease, visit: www.cjdsupport.co.uk/share-your-story/
Suggested text 4:
Today is International CJD Awareness Day (12th November). A day dedicated to raising awareness of CJD and other prion diseases. At present there are no approved prion disease treatments and the CJD Support Network is here for those who are currently being affected. But international researchers like www.gatebio.com @SangamoTx @prionalliance @ionispharma @MRC_Prion give us hope for the future*. For updates on prion protein targeting treatments being assessed or considered, visit: cjdisa.com/research/clinical-trials/
One potential treatment developed by @MRC_Prion is an antibody called PRN100, along with the @CureCJDCampaign, they are trying to raise funds for an organised clinical trial to test this treatment. Visit their website here to learn more www.curecjd.org
The International CJD Support Alliance brings together patient associations in different countries under one umbrella, they post helpful updates about treatment related research on their website: https://cjdisa.com
Click HERE to download a folder containing all our International Awareness Day graphic resources.
*@handles taken from X (formerly twitter) If using this text across other social media platforms, it may be necessary to edit handles referenced here.
