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Medicine · 01:57

ASOCIACION ESPAÑOLA CJD

  • By SARA GONZALEZ NAVARRO · Spain, Europe

 

ASOCIACION ESPAÑOLA CJD

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 5 years, devoting more than 2 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.

What impact would winning have on the charity?

Our activity in the association is highly valuable because of the lack of other supporting associations. Since this disease is ultra-rate (one out of million people), we do not receive the attention that is paid to other more common diseases and us, people affected by this devastating disorder feels lost and abandoned. For this reason, an organization like the Spanish association of CJD is incredibly valuable for families that seek information, support and advice that is not provided by other means. Besides, its condition of rare disease makes difficult to get public financial support because this is destined to more common diseases. For that reason, the work of volunteers that among other things search forany economic contribution has an extraordinary value to those affected. The association distributes any contribution, first to keep the organization working and second, competitively assigning any financial resource to the best researchers on the area. On the other hand, this disease needs to publicity to get knownandthis platform offered by DHL for this laudable purpose would be extremely beneficial for our association. It is not easy to obtain publicity and financial support, so any contribution in these directions, even small, would be inestimably valuable for us.

What impact would winning have on the employee?

How will it be affected? Happiness, hope, thanks, strength to continue. The happiness of knowing that I have support in this fight, hope to find a terpia that can get us out of this nightmare in which we live, thanks to DHL and the more than 100 DHL employees who support me, and strength to get up tomorrow and continue fighting. We need help to continue fighting.

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