| Good morning. My name is Hatte Blejer. My husband, Daniel Blejer, died of
CJD three weeks ago on January 2, 2004. He was 52 years old and worked as a
scientist for NASA launching scientific satellites. Danny was a sweet, good
man. He touched many people in his life with his zest for life and his
generosity. His friends observed that he was a man without a pinch of evil.
His love of science, especially physics and astronomy, was legendary. He loved
being associated with space exploration and he was devoted to me and to his
remarkable children, Ariella (age 23) and Mike (age 19). He will not see
Ariella become a Ph.D. in virology preventing human disease through vaccine
research. He will not bond anew with Mike as a grown man, a man with a good
heart like his dad. Daniel underwent numerous brain surgeries in the 1970s. It is likely that he was infected 25 years ago via a dura mater graft – infected human cadaver material used to repair his brain after tumor surgery -- although we may never prove it. Daniel’s illness and death were horrific. I can barely comprehend what happened to him during a year of rapid decline. One day he was showering himself. The next day he did not remember what soap was. Large chunks of motor and cognitive ability just disappeared overnight. Daniel was young and strong and died slowly but for the last 6 – 8 months of his life he could not speak, swallow, eat, move a single part of his body voluntarily, or show emotion. His beautiful smile, a Daniel Blejer hallmark, was gone. He stopped recognizing the family he was so devoted to. All that was left was a frail shell of our beloved husband and father lacking any connection but the most primitive with other human beings. How ironic for a brain-wasting disease to take such a gentle man, a physicist who understood and was in awe of our complex world and whose brain was so central to his life. I am here today to urge you to make brain-wasting disease in people reportable in every instance. I can tell you firsthand that it is difficult to report CJD. Danny was diagnosed in early September at Johns Hopkins. Danny was B negative and gave blood 70+ times in the past 25 years. He also underwent 7 brain surgeries in 2003 when his CJD was active. I begged Hopkins to report his case was told by the hospital to report his CJD myself. It took 5 painful calls to get someone in the Red Cross who understood the implications of what I was reporting. The Red Cross notified the CDC who called me. I notified the Virginia Department of Health through email. They did not contact me or respond except to send me a rudimentary typology of CJD which they cut and paste from somewhere. They told others that there were no cases in Virginia in 2003. Danny was likely infected in Texas or Massachusetts, resided in Virginia, and died in Washington, D.C. Who knows whether there is a mechanism in our public health system to figure out where he resided when he was infected and what his risk factors were. CJD is reportable in the UK and in Europe. Even Feline CJD is reportable in the UK. Why is the greatest country in the world lagging in saving human lives? Daniel would be alive today if precautions were in effect in the 1970s. Please don’t let another family suffer needlessly. This is the worst disease and death imaginable. I beg you to make every case of brain-wasting disease reportable and to fund increased testing and monitoring of CJD and other brain-wasting diseases. Even one additional victim and one suffering family is one too many. Hatte R. Blejer (CJD Voice) Alexandria, VA Danny's Tribute Page |