Remembering Rev. Jesse Jackson, Civil Rights Icon Who Lived With PSP

The Rev. Jesse L. Jackson, Sr., civil rights leader and two-time presidential candidate, passed away today at 84 after living with progressive supranuclear palsy (PSP) for more than a decade.

Few voices in American history carried the moral weight and transformative power of Rev. Jackson's. Uniquely gifted with a preternatural ability to speak to the hearts of the marginalized, he preached a vision of harmony and unity at a time when those communities could hardly imagine such a world. His calls to "keep hope alive" were an act of faith — in hope itself as a force capable of transforming the future. For so many Americans, Rev. Jesse Jackson was hope.

A dreamer with an expansive vision of American opportunity, Rev. Jackson translated the voting rights gains of the civil rights movement into political reality, playing a pivotal role in making possible what many once thought unimaginable: a Black president. Inspired deeply by his mentor Rev. Dr. Martin Luther King Jr., who served as both intellectual and spiritual model, Jackson carried King's vision forward and made it his own, imagining a broad coalition of poor, working-class and marginalized people with the power to transform the mind of America.

Rev. Jackson was 76 when he announced in November 2017 that he had been diagnosed with Parkinson's disease. His diagnosis of PSP, a condition frequently misdiagnosed as Parkinson's, was revealed in April 2024. Rev. Jackson's public journey with the disease, including his hospitalization announced in fall 2025, brought needed national visibility to a condition that affects thousands of Americans and their families. Despite his diagnosis, he remained active for years — joining voting rights protests, encouraging young people to vote and, as recently as 2025, standing against the rollback of diversity, equity and inclusion (DEI) programs at major American corporations.

CurePSP will host a congressional briefing on PSP on March 5, led by Rep. Suhas Subramanyam and Rep. Gus Bilirakis, with support from members of the Congressional Black Caucus and other partners. The briefing will honor Rev. Jackson's life and legacy, and his family's courage in bringing visibility to PSP. We hope this moment will inspire more members of Congress to champion PSP research and care, continuing the work begun by Rev. Jackson and former Rep. Jennifer Wexton.

In his landmark “Keep hope alive” speech to the 1988 Democratic National Convention, Rev. Jackson told the story of his grandmother in Greenville, South Carolina, who could not afford a blanket but refused to let her family freeze. Instead, she took scraps of old cloth — patches of wool, silk, gabardine, croker sack — and sewed them into a quilt, "a thing of beauty and power and culture." He implored a nation to do the same: to pull the patches and pieces together, bound by a common thread.

For the CurePSP community — those living with PSP and related diseases, care partners, medical professionals, researchers and advocates — hope is what binds us. It drives every research breakthrough, sustains every family that refuses to face this disease alone and keeps people going when the road is hard. Rev. Jesse Jackson kept hope alive for millions. At CurePSP, we carry that hope forward — because hope matters.