Creutzfeldt-Jakob Disease
Creutzfeldt-Jakob disease (CJD) is a rare, rapidly progressing, fatal neurodegenerative disease – each year, only about one case is diagnosed per million people. The science behind CJD remains an enigma and there are no available therapies, cures, or even ongoing clinical trials. After the onset of symptoms, patients live for an average of between three weeks and six months. This disease begins when a protein, for some unknown reason, misfolds in the brain and becomes contagious, convincing all nearby proteins to rebel and misfold as well. This misfolded contagious protein is known as a prion, which is why CJD is classified as a prion disease.
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There are four different forms of CJD.10-15% of those diagnosed with CJD acquire the disease genetically. A small minority contract the disease through iatrogenic contact, meaning that they had nervous system surgery with infected tools. An even smaller minority contract it from eating contaminated meat. José suffered from a fourth type of CJD, the most common, which is called sporadic CJD. There is no obvious cause of sporadic CJD.
Our father would often tell us that, today, neurodegenerative diseases are where cancer was thirty years ago – meaning that the opportunity to change outcomes and to improve the lives of patients is immense. We believe it’s time to do something about the poor prognosis of CJD in the hopes that, one day, no family has to experience the pain we have experienced.
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The José Baselga Research Fund Founded by AstraZeneca (U.S.)
In the aftermath of José’s death, we, as a family, worked alongside AstraZeneca and Charities Aid Foundation to design and implement the “José Baselga Research Fund.” Every year, this fund will award the Baselga Grant, comprising of up to $50,000 to support meaningful clinical or basic science research on a global scale related to prion diseases.
More information about the application process and grant details coming soon!
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Hospital Clinic Barcelona (Spain)
On the morning of 21 March 2021, José passed away and, as we held one another, we were overcome by an urge to fight in all the ways he had not been allowed to do so. We knew, in a moment of clarity, that this was what he would have wanted. That afternoon, we created a GoFundMe page asking loved ones to donate to CJD research in lieu of flowers. We set an initial goal of 25,000 euros, and did so reluctantly, knowing it was a very ambitious ask. We were overwhelmed by the response. In a matter of days, we had surpassed our goal by an incredible amount, raising 223,182 euros.
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We donated this money to El Hospital Clinic, and they will use the contribution to conduct a longitudinal clinical research project on patients with the genetic form of CJD. While our father suffered from sporadic CJD rather than the genetic type, we intentionally gave our money to genetic CJD research. Genetic diseases offer scientists special insight because patients with genetic diseases can be identified early and tracked over long periods of time. Additionally, sporadic CJD patients are less likely to want to become part of clinical research since they are only given a few months to live from the moment of diagnosis, which they usually want to spend surrounded with loved ones and not in the hospital.
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The crowdfunding effort showed us the deep love and appreciation many people had for José. It also taught us that this was only the beginning of a much longer fight.
