SRES 499

Whereas Creutzfeldt-Jakob disease (CJD) is a rare, fatal brain disorder within a group of illnesses called prion diseases;

Whereas CJD occurs in approximately 1 to 2 individuals per 1,000,000 each year, resulting in approximately 600 cases annually in the United States, 85 percent of which are designated as sporadic, with no known causes, while 10 to 15 percent are deemed genetic, and less than 1 percent are deemed acquired;

Whereas, in the early stages of the disease, CJD patients may exhibit failing memory, behavioral changes, impaired coordination, and visual disturbances, and as the illness progresses mental deterioration becomes more pronounced while involuntary movements, blindness, weakness of extremities, and ultimately coma may occur;

Whereas CJD typically leads to death within a few months to 1 year following the onset of symptoms;

Whereas CJD is responsible for 1 in every 6,000 deaths in the United States each year;

Whereas comprehensive prion disease surveillance is critical in order to develop more efficient detection methods and to determine whether humans can acquire the disease through the consumption of prion-contaminated beef (known to cause bovine spongiform encephalopathy (BSE) or mad cow disease) or meat from cervids (deer, elk, and moose) affected by chronic wasting disease (referred to in this preamble as CWD);

Whereas CWD is a fatal condition in cervids, caused by misfolded prions, that has been detected in cervids in more than 36 States and all 4 regions of the United States;

Whereas monitoring the prevalence of prion diseases, including determining a disease’s incidence and whether it was acquired from animals or other humans, is critical;

Whereas continued prion disease surveillance, particularly through examination of postmortem human brain tissue, is imperative to evaluate whether CWD has or can spread to humans;

Whereas the National Prion Disease Pathology Surveillance Center is the only laboratory-based organization in the United States that monitors human prion diseases, which is critical to protecting the public health of the United States;

Whereas Alzheimer’s disease and related dementias (referred to in this preamble as ADRD) research could benefit from the study of prion diseases, like CJD;

Whereas caregiver and health-services research of ADRD should be applied to prion diseases, like CJD, which share many of the same challenges;

Whereas the families and communities affected by CJD have compelling stories due to the rarity and rapid effects of the disease;

Whereas, from the time of diagnosis, CJD presents unique challenges and burdens for patients, their family members, and caregivers given the rapidly progressive nature of this devastating disease; and

Whereas the establishment of November 12, 2025, as Creutzfeldt-Jakob Disease (CJD) Awareness Day would raise awareness about this rare, rapidly progressive, and invariably fatal disease: Now, therefore, be it