Main aim of the charity
The goal is to find a cure, a salvation, a hope. Advance the date of having a therapy. In countries like USA or UK among many others, there is an association of CJD, and from all of us we try to support each new diagnosed case, offering them genetic, psychological and scientific advice, and fighting to avoid being alone in this tragic struggle with the worst of the possible endings.
The therapy we seek will save thousands of people around the world without distinction.
How the employee got involved and why
Five member of my family died of this diasease in the latest years. The last one, my 30-year-old cousin . At the moment, 9 members of my closest family have been diagnosed of this neurodegenerative disease. There are another 11 potential carriers, including my two children and me. As an ultra-rare disease, economic resources to investigate a cure for this disease that condemns us to death are scarce.
What work does the employee do for charity?
I have been involved with the association for 6 years, devoting more than 3 hours a day to seek financial contributors, publicizing the disease and the Association, organizing events and connecting patients with doctors, genetic advisors and researchers.
My participation in the organization of the annual meetings and other events requires any skill imaginable as it involves assuming very diverse tasks (i.e. contacting speakers, organizing logistics, coordinating donations).
Being in touch with other affected families, researchers and clinicians and trying to provide support is also a way to deal with this terrible disorder, since actively participating in the association means that I can do something to help people that are dealing with a similar situation. Moreover, it provides the opportunity to make this rare disease visible in the society which is also helpful to provide further assistance to families that still do not know they could be affected.
Also I develope the responsibilities of vice president of the association.