Creutzfeldt-Jacob Disease (CJD) is a fatal, incurable neurodegenerative disease which erupts from the ages of 30s causes a rapid deterioration and death in couple of months.
This horrible disease is rare in the world, but much more common in Israel at the community of Libyan and Tunisian Jewish, as well as Italians and Slovakian. This mutation is dominant so it's enough for one parent to passes the risk on, so at next generation it will be in all Israel population unfortunately.
The organization was founded at 2008 by Alice Anane, who lost her father in a young age to gCJD and she and her siblings and her daughter were found positive for the mutation who causes the risk for this horrible disease. The activity became her mission in life
The organization consolidate the community of genetic families and recruiting them to research. Alice is connecting many researchers over the world for collaborations, and for advancing research by sharing information and samples of carriers, to create new studies for new revelation of this disease.
Alice is presenting at many conferences in the world, including Harvard, and she is well known in the field.