Another day, another dread disease you probably didn’t know existed. Lewy body dementia is a specific type of neurodegenerative disorder that leads to a progressive decline in mental and physical abilities, and eventually death. It’s rare, which means there isn’t a lot of money to study it. But the effort to find a cure just got a big boost, thanks to the Harry T. Mangurian Jr. Foundation in Fort Lauderdale, FL.
It’s $5.75 million, and it will serve to establish the Mayo Clinic Dorothy and Harry T. Mangurian Jr. Lewy Body Dementia Program, which will build on the foundation’s previous support of Mayo research to advance awareness and understanding of Lewy body dementia. Funds will also support the brain bank: a huge repository of, um, brains, where about 1,000 people who had Lewy body dementia donated their organs for study.
Lewy body dementia differs from Alzheimer’s and Parkinson’s both in caché—as in, it doesn’t have much—and in symptoms. In a way, you could think of LBD as Alzheimer’s wacky uncle, bringing not just memory loss, but hallucinations and delusions, too. “Patients will see things that aren’t there—small animals, small children,” says Dennis Dickson, M.D., a neuropathologist and director of the new program. “They will, for example, deny that their spouse is their spouse—‘You look like my wife, but you’re not my wife. You’re an impostor.’”
Though the first cases of the disease were published in the mid-1960s, the disease itself wasn’t recognized as distinct until the 1980s, says Dr. Dickson, who has been conducting research on the disease for nearly 30 years. It’s estimated that the disease affects 1.3 million people in the U.S. alone, but because it can so closely resemble Alzheimer’s or Parkinson’s, diagnosis can be tricky.
The new program will include a range of diagnostic tools, including sleep studies, neuroimaging techniques, long-term patient studies, and lab research. The overall goal is to find medications that will help patients, and meanwhile, the program will serve to raise awareness just by existing. As with a lot of disease-specific philanthropic gifts, there’s a personal connection. Harry T. Mangurian Jr. was a Fort Lauderdale developer who also worked in Rochester, NY. He’s passed away now, but his widow, Dorothy Mangurian, has Lewy body dementia. “We’re especially grateful to the Mangurian Foundation for their commitment to making Lewy body dementia a more widely known disorder,” Dr. Dickson says.