While civil rights leader Jesse Jackson’s cause of death has not been confirmed, he had battled Progressive Supranuclear Palsy, a rare neurological disorder.
Jackson first revealed he had been diagnosed with Parkinson’s disease in 2017, but last year a spokesperson for Rainbow PUSH Coalition said Jackson was diagnosed with PSP in April 2025.
“It is a more rare disease,” said Jessica Shurer, director of Clinical Affairs at CurePSP. “There are similarities in the parts of the brain that are affected, so there can be similarities in the symptoms [between Parkinson’s and PSP.]”
PSP is considered a more serious and faster progressing disorder. Shurer said symptoms progress nearly three times faster than Parkinson’s disease.
“What makes PSP different than Parkinson’s disease is it usually doesn’t respond to the Parkinson’s medications,” said Dr. Amy Brown, a Neurology professor at Vanderbilt University and director of one of CurePSP’s Centers of Care. “It is more serious in the sense that Parkinson’s we have lots of ways to treat it, and patients respond well. We don’t have treatments for PSP.”
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PSP is considered rare, affecting between 6 and 10 individuals per 100,000. Although experts say these numbers are likely underestimates due to frequent misdiagnosis.
“Eventually it will cause difficulty moving your eyes horizontally, which really impacts patients, light sensitivity, difficulty swallowing and an inability to walk,” Brown said. “Those symptoms progress a lot quicker.”
Dr. Borna Bonakdarpour, a neurology professor at Northwestern University’s Feinberg School of Medicine, said research is underway to better help understand its cause.
“They may have trouble with their speech, the speech may sound effortful and sometimes when it progresses fast, the person may not be able to talk,” he told NBC 5. “It’s horrible to see this, unfortunately. Especially with no cure.”
The diagnosis didn’t stop Jesse Jackson from fighting for what he believes in. He continued to push for civil rights, and attended marches fighting for criminal justice reform after the death of George Floyd in Minneapolis. He also made an appearance at the Democratic National Convention in Chicago in 2024.
While he didn’t speak at the DNC, his presence was enough to captivate an entire arena and move audience members to tears.
One of his last public apperances was his 83rd birthday party in October 2024, where he accepted an award at Chicago Mayor Brandon Johnson’s office.
He was unable to attend his 84th celebration last October and was hospitalized in November.
Shurer said she hopes part of his impact will be raising awareness for PSP so experts can continue working towards faster diagnoses and ultimately a cure.
“It’s a very isolating experience when you’re diagnosed with something no one has heard of,” she said. “Having a face to the diagnosis and having a sense of community is critical.”
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