Monthly Archives: May 2024

Awareness is key

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The state of Virginia has just enacted a law declaring each May “PSP Month of Awareness.” Former Virginia State Senator and current US Representative Jennifer Wexton announced her diagnosis of PSP in September 2023 and has been working to help spread much-needed public awareness of the disorder. She still has many friends in the state legislature who stepped up to the plate for her and the approximately 20,000 others in the US with PSP.

It may sound like a mere charitable if toothless gesture to honor a respected, ill colleague. But if more doctors, researchers and members of the public were aware of PSP, there would be more rapid diagnosis, faster clinical trial enrollment and more attention from researchers, philanthropists and drug companies. PSP has a slightly greater population prevalence than Lou Gehrig disease (or amyotrophic lateral sclerosis or ALS), which enjoys much greater awareness. Reasons for that are that ALS has been known to neurologists for a century longer (1869 vs 1964), it’s much easier to diagnose (a neuro exam and an EMG), has a more rapid course (averaging three years vs. an average of seven years for PSP), can sometimes affect much younger people than PSP ever affects, and maybe most important, is named after a beloved athlete who famously retired at age 36 and died two years later.

I don’t wish PSP on anyone, but if someone had to get it, I’m glad it was someone with Representative Wexton’s courage, foresight and influence.

Get on this list

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Today I officially ended a 10-year stint on the Scientific Advisory Board of the Frontotemporal Dementia Disorders Registry (FTDDR).  It maintains a list of people with the “FTD disorders,” loosely defined to include PSP and corticobasal degeneration as well as the standard forms of FTD.  The FTDDR is the only widely-available registry for PSP and collaborates closely with CurePSP.  It is supported financially by the Rainwater Charitable Foundation, which provides generous funding and infrastructure support for research on tau-based disorders, especially PSP. 

Registering with the FTDDR would allow you to contribute information on your condition to a powerful tool for researchers, philanthropists, government policymakers and patient support organizations.  It could serve to introduce you to drug companies and academic researchers seeking patients for treatment trials or observational (i.e., non-treatment) research.  Of course, you can choose which information about yourself to include and not to include, and you can opt out of consideration for treatment trials if you like. 

The registry is designed to safeguard your confidentiality. When the registry personnel supply data to outside organizations , the registrants’ identifying and contact information is stripped away first. If an outside organization wishes to contact contact you about a research project, the registry office would manage that for them. In that way, you could decline without revealing your identity to the outside organization.

I highly recommend that you register.  Just go to https://ftdregistry.org/ and follow the instructions.