Poppy was full of life and always smiling, with light in his eyes and a magnetic personality. He was a devoted son, brother, father, grandfather, partner and friend. A wonderful man with a heart of gold, he was much loved by his family and friends alike. To see him suffer such a terrible, undeserving fate was devastating. We have launched ‘Poppy’s Crusade – Marek’s Campaign Against CJD’ in loving
memory of Poppy and to create something positive out of our tragic loss. Our aim is to promote awareness about CJD and raise much needed funds to support research into the disease. Poppy's generous heart was always giving to others and we want to ensure that his legacy continues. What is CJD? Creutzfeldt-Jakob Disease (CJD) is a rare and fatal neurological disease that has no effective treatment or cure. It is one of a group of diseases that affects humans and animals, known as transmissible spongiform encephalopathies (TSE) or prion disease. In Australia we average about 35 cases a year. Typically, but not always, the onset of symptoms occurs in people between 55 to 70 years of age. The average duration of illness is between 4 to 6 months, with 90% of individuals losing their lives within a year. The majority of cases in Australia are sporadic (no known cause) with 10-15% of cases being genetic/inherited. Early symptoms may include difficulty with vision, speech or balance and the individual may become confused, depressed and suffer personality changes. The progress of the disease is usually very rapid with the patient often suffering from hallucinations, lack of coordination and dementia. They will sometimes become very sensitive to sound and light, agitated and can develop jerking movements (known as myoclonus) as well as rigidity of limbs. Patients eventually lose the ability to walk and speak, may become incontinent and blind and finally, unable to eat, they may enter a coma. You can learn more about CJD by visiting the CJD Support Group Network (CJDSGN) at www.cjdsupport.org.au. Supporting our campaign
Your support is invaluable and you can assist our campaign in any of the following ways:
1. ‘Like’ our page and invite your friends to do the same.
2. Post a comment or message.
3. Make a donation at www.cjdsupport.org.au. Please use the reference ‘Poppy’s Crusade’.
4. Participate in one of our fundraising events, details of which will be posted as they are confirmed.
5. Organise your own fundraiser.
6. Join our mailing list by contacting us at [email protected]. Due to the rare nature of the disease, awareness about CJD is limited and funding is therefore challenging. Poppy’s Crusade and the CJD Support Group Network (CJDSGN) guarantee that every cent raised will go directly to support the CJD research teams in Australia, who are working hard to find some answers about the disease. Please join us in our campaign to make a difference for future families who unfortunately may also face the devastation of this very rapid and always fatal disease.
