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.&nbsp;
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.&nbsp;
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.&nbsp;
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.&nbsp;
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.&nbsp;

What is World HSP and PLS Day? How to Help.

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

On behalf of the Spastic Paraplegia Foundation (SPF) and a global coalition of patient organizations, we respectfully request your sponsorship of a Congressional Proclamation recognizing October 17 as World Hereditary Spastic Paraplegia (HSP) & Primary Lateral Sclerosis (PLS) Day.

HSP and PLS are rare, progressive neurological disorders that currently have no cure. They impact thousands of individuals and families in the United States and millions worldwide, leading to increasing disability, emotional strain, and financial burden. Yet, because these conditions are largely unknown to the general public and even many healthcare providers, diagnosis is often delayed for years, and research funding remains limited.

The movement to recognize October 17 as World HSP & PLS Day began with 19 patient associations from 17 countries and is rapidly expanding. The date honors Nobel Prize–winning scientists Santiago Ramón y Cajal and Camillo Golgi, whose landmark discoveries in 1906 laid the foundation for our modern understanding of the nervous system. By joining this initiative, the United States can reaffirm its leadership in rare disease research and strengthen international collaboration to accelerate treatments and cures.

SPF is a U.S. based 501(c)(3) nonprofit representing members from all over the United States, including members from 65 countries worldwide. We are committed to advancing research, improving care, and providing resources for those affected. Our members, advocacy partners, and research collaborators are united in the belief that raising awareness through an official World Day will galvanize action, foster hope, and drive measurable progress for patients and families.

I am writing to ask for your support in officially recognizing October 17 as World Hereditary Spastic Paraplegia (HSP) & Primary Lateral Sclerosis (PLS) Day through a Congressional proclamation.

A formal proclamation would raise critical awareness, encourage research collaboration, and provide hope for the thousands of Americans and millions worldwide affected by these diseases.

I urge you to champion this important cause by sponsoring or co-sponsoring the proclamation recognizing October 17 as World HSP & PLS Day.