Fundraising WalkBrings Awareness to Rare Brain Disorder
Photo from the 2023 Strides for CJD Awareness and Fundraising Walk provided by Darlene Chorman
SARATOGA SPRINGS — The annual Strides for CJD Awareness and Fundraising Walk on Oct. 5 hopes to spread the word about Creutzfeldt-Jakob Disease (CJD), a rare brain disorder that leads to dementia.
The event’s organizer, Darlene Chorman, an associate broker at Roohan Realty, lost her father Charles Hildenbrand to CJD nearly three decades ago.
“The medical community is still not as aware of this disease, and it goes undiagnosed too frequently,” Chorman told Saratoga TODAY. “My dad was hospitalized several times by different doctors who made diagnoses that were wrong, so this is why I work every year to raise funds for awareness, support the families affected, and in memory of my dad.”
According to the Mayo Clinic, symptoms of CJD can be similar to those of Alzheimer’s, but CJD usually gets worse much faster and leads to death. The clinic estimates that 1 to 2 cases of CJD are diagnosed per million people worldwide each year. But Chorman suspects that rates might be higher than reported because CJD can often go undiagnosed, and if the disease isn’t listed on a death certificate as a cause of death, it isn’t calculated into the stats.
“Over and over, when I talk to people even in the medical community, they don’t know about it,” Chorman said. “It’s not on their radar, they weren’t really educated on it.”
Chorman said that when her father was diagnosed 27 years ago, the only treatment was a brain biopsy, which was considered a risky procedure because hospitals didn’t have an effective way to sterilize equipment that came into contact with infectious tissue.
Since then, sterilization, a spinal tap procedure, and, most recently, a pharmaceutical trial by Ionis, have all become significant breakthroughs in the treatment of CJD.
“These are all advancements since my dad died from this,” Chorman said, “and the CJD Foundation has been instrumental in raising funds to educate the medical community.”
The Strides for CJD Awareness and Fundraising Walk is on Oct. 5 at the Veterans Memorial Park on Adams Road off of Geyser Road.