NEW YORK, Feb. 26, 2026 (GLOBE NEWSWIRE) -- The passing of Rev. Jesse L. Jackson, Sr. has cast a spotlight on progressive supranuclear palsy (PSP), one of the most misunderstood neurodegenerative diseases affecting Americans today. As tributes pour in, so too have questions about the disease he lived with for over a decade. First diagnosed with Parkinson's in 2017, Rev. Jackson did not receive his PSP diagnosis until 2024 — facing the same confusion and uncertainty that define the diagnostic journey for thousands of PSP families.
Understanding PSP
PSP is a rare neurodegenerative disease affecting 6-10 individuals per 100,000, with an estimated 30,000 in the United States, likely an underestimate given how often it is misdiagnosed. While symptoms typically begin in the early 60s, onset can occur as early as a person's 40s or 50s. Symptoms include problems with balance and coordination, eye movement, speech, swallowing and thinking.
PSP is frequently mistaken for Parkinson's disease because the two conditions share certain early symptoms, making it difficult to diagnose. Both can cause balance problems, stiffness and slowness, but the differences are significant. Tremor, common in Parkinson's, is rarely present in PSP. People with PSP tend to fall backwards rather than forwards. And while Parkinson's typically responds to medication, PSP does not — which is often the first signal that something else is going on. When symptoms progress faster than expected or Parkinson's medications fail to work, healthcare professionals begin to rethink the diagnosis. By the time the correct diagnosis is made, years have passed.
There are currently no approved treatments, no disease-modifying therapies and no cure for PSP.
The consequences of misdiagnosis are significant, says Jennifer Brummet, Director of Scientific Affairs and Partnerships at CurePSP: “Misdiagnosis means people with PSP face delays in gaining access to the appropriate clinical teams and symptom management. Improving the diagnostic journey is a key priority for CurePSP, critical to better clinical care and any future breakthroughs in treatment or cure.”
Rev. Jackson kept hope alive for millions. At CurePSP, we carry that hope forward, keeping it alive until we have a cure.
For resources, support and a path to specialized care, visit www.psp.org.
CurePSP Experts Available for Interview:
- Kristophe Diaz, PhD, Chief Executive Officer of CurePSP.
- Jennifer Brummet, PhD, Director, Scientific Affairs and Partnerships at CurePSP.
- Jessica Shurer, MSW, LCSW, Director, Clinical Affairs and Advocacy at CurePSP.
To arrange interviews, contact Sabrina Da Rocha at 717-552-1393 or darocha@curepsp.org
About CurePSP
CurePSP is the leading nonprofit organization dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). CurePSP funds critical research and establishes partnerships internationally. Through its advocacy and support efforts, CurePSP enhances education, care delivery and quality of life for people living with PSP, CBD and MSA and their families. Science, community and hope are at the heart of CurePSP's mission and all its services. CurePSP is a registered 501(c)(3) charity within the United States (EIN: 52-1704978).
Contact:
Kristophe Diaz, PhD
Chief Executive Officer
646-725-1453
diaz@curepsp.org
