Please Support Proclamation Recognizing World HSP & PLS Day on October 17

Imagine a world where people who live with Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS) don’t have to explain their conditions every time they mention them. Where their struggles—and their hopes—are recognized, not just by doctors, but by neighbors, employers, and lawmakers. That’s the vision behind recognizing October 17 as World HSP and PLS Day. 

This day isn’t just another date on the calendar. It’s a global rallying cry, led by 19 organizations from 17 countries who have come together for the first time to say: it’s time to shine a light on these rare and often misunderstood neurological diseases. These groups know firsthand the toll of living with HSP and PLS—a tangled mix of physical challenges, uncertain futures, and a lack of understanding from the outside world. For the thousands affected, awareness isn’t optional; it’s essential. 

In the United States, advocates are pushing for official recognition through a congressional proclamation. It’s a big step—one that would put HSP and PLS on the map in a way that brings real change, from increased research funding to better access to healthcare. But this kind of recognition doesn’t happen in a vacuum. It takes a groundswell of voices, and that’s where you come in. 

Contacting your local representative or senator might feel like a small act, but it’s how movements grow. When lawmakers hear from their constituents—real people living with these conditions, or their families and friends—it puts a human face on the issue. Each phone call, email, or letter is a reminder that these diseases matter, that those living with them deserve visibility, support, and hope. 

October 17 as World HSP and PLS Day is more than symbolic. It’s a call for understanding, for action, and for a future where no one living with HSP or PLS feels invisible. If you care about this cause, reach out. Your voice could be the one that tips the balance.