A reader just commented on the need to improve public awareness of PSP and asked how that could be accomplished.

CurePSP devotes a large chunk of its budget and staff to raising awareness of PSP.  For example, a few months ago, some of CurePSP’s leaders, including myself, met on Capitol Hill with 12 members of the House and Senate from both parties to make them aware of PSP, CBD and MSA and to discuss ways the Federal Government might help.

The Michael J. Fox Foundation is certainly aware of PSP and this year is co-funding multiple research projects in PSP alongside CurePSP. Its website mentions PSP as a condition related to PD that needs to be considered as a diagnostic possibility alongside PD.

Celebrities, certainly not exempt from PSP, have stepped forward:

• In 2020 and 2021, “Zoey’s Extraordinary Playlist” was a series on NBC. One of its producers had a relative with PSP and arranged for the main character’s father, played by Peter Gallagher, to be similarly affected.  The actor did a reasonable job mimicking its disabilities and the effects on his family were portrayed in an accurate, thorough and sympathetic way. 
• Linda Ronstadt announced that she has PSP in 2019, six years after receiving an initial diagnosis of PD.  The long survival and initial misdiagnosis as PD suggest that she has the “PSP-Parkinsonism” subtype, but I have no inside information.
• Back in 1999, the British-American comic actor and musician Dudley Moore was diagnosed with PSP.  A few months before he passed away in 2002, he and his family organized a high-profile fundraiser for CurePSP at Carnegie Hall in New York City.
• In 2023, Congresswoman Jennifer Wexton of Virginia announced that she had PSP.  She retired in 2024, but not before using an AI-powered speech enhancement device to deliver a speech on the House floor.  She was instrumental in adding PSP, CBD and MSA to a bipartisan bill establishing a way to efficiently coordinate all Federally-supported research in that area. The bill easily passed and is now the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act.
• Rev. Jesse Jackson, the 84-year-old civil rights leader and activist, announced his diagnosis of PSP in 2025.

I have no doubt that once a drug shows promise against PSP and looks like it will be approved, the sponsoring pharma company will cover the Earth with PSP awareness.  Let’s all hope that happens soon, but until then, anyone can help. Just mention something about PSP on social media platforms and other Websites. Include links to CurePSP (psp.org) and to other reputable sources of information and support (hint – hint).