Euro HSP Federation

19/10/2026

Soms zegt een video meer dan woorden. 💥
Dit is waarom we doen wat we doen: sterker worden, grenzen verleggen en elkaar omhoog trekken.

Elke stoot, elke druppel zweet, elke stap vooruit, het telt. Niet alleen in de ring, maar juist daarbuiten.

Wil jij ook die kracht ervaren of iemand anders die kans geven?

🥊 Doneer
🥊 Start een actie
🥊 Of vraag een boksclinic aan

Samen maken we het verschil.

12/10/2026

A World Day to Raise Awareness of HSP. And There’s a Place for You, Too.

On October 17, 2026, people from all over the world will come together for World HSP Day, dedicated to Hereditary Spastic Paraplegia (HSP).

Over the years, we have worked hard to make sure that talking about HSP means talking about a person, not just a condition.
Much research has been carried out, and many studies and clinical trials have taken place over the years. Yet, it is still not enough. We need greater awareness, stronger international collaboration, and more research.

We need to stand a little closer to one another.

That is why World HSP Day brings together patients, families, researchers, healthcare professionals, and associations from around the world: one community, united by a shared goal — advancing research and bringing us closer to better treatments.

This year’s motto feels very close to our hearts: Every Step Counts.

What’s happening?

1) Share your story.
On October 17, and in the days leading up to it (starting tomorrow for those who can), people living with HSP are invited to share a short video or photo on social media showing how they move — whether walking independently, using a mobility aid, or using a wheelchair.
It’s a simple way to show the world what living with HSP really looks like.

The video can include the following words, which will be shared around the world in different languages:

“Dear everyone, walking is a big challenge for me. For you, helping is just a small step. Would you like to join the fight against HSP? Visit www.worldhspday.com and make a donation. Every euro goes directly towards research.”

2) Join the international webinar.

Also on October 17, patients, neurologists, researchers, volunteers, and associations will come together online for an extended live webinar hosted by Alex Sijm.

Every 30 minutes, new guests will share scientific updates, personal perspectives, and international initiatives. You can submit your questions via the chat, although unfortunately the entire event will be in English.

From 11.00 to 13.00 in Dutch, from 13.00 to 15.00 in English. Subtitles will be on.

Link: https://schoon-producties.webinargeek.com/world-hsp-day-webinar/join/cuxlu3wn

3) An international conference to build connections.

From October 16 to 18, 40 representatives of HSP associations from around the world will gather for the International Congress organised by Life4HSP.

They will discuss research, fundraising, patient involvement, and collaboration across countries.

One shared story creates awareness. Many stories together become a movement.

If you’d like to take a closer look, you can find all the information here:
www.worldhspday.com

12/10/2026

Every Step Counts...

12/10/2026

Andrés....every step counts.

12/10/2026

HSP PLS world awareness Day, 17 Oktober .

Stronger Together!

11/10/2026

Dario ed il suo racconto per il 17 ottobre:

"Cari tutti, per me, camminare è una grande sfida. Per voi, aiutare è solo un piccolo passo. Volete unirvi alla lotta contro la PSE? Visitate www.worldhspday.com e fate una donazione. Ogni euro va direttamente alla ricerca."

“Dear all, walking is a big challenge for me. For you, helping is just a small step. Would you like to join the fight against PSE? Visit www.worldhspday.com and make a donation. Every euro goes directly towards research.”

07/10/2026

https://spg76research.org/

Please share this call for finding people with SPG76.

spg76research.org

The website includes information about SPG76, details about the ongoing research effort, and a private patient contact form for individuals and families who would like to get in touch directly.

If you or someone you know is affected by SPG76, or if you work with HSP patients and come across a family affected by SPG76, please feel free to share the website with them. It provides a place to learn more about the condition and connect privately at their own discretion.

Please help us spread the word and reach more SPG76 patients and families.

"Omar Alnuaimi, an SPG76 patient and founder of the SPG76 Research Foundation, would like to connect with others who have SPG76 or a CAPN1 diagnosis. There are approximately 100 confirmed cases worldwide, with many more suspected undiagnosed, so every person matters. You can connect privately through the form at spg76research.org or by writing to [email protected]. "

Patient-led nonprofit funding preclinical research for SPG76, an ultra-rare neurological disorder caused by CAPN1 gene mutations. Approximately 100 cases confirmed worldwide.

21/09/2026

On Saturday, 17 October 2026, the second World HSP Day will unite people around the world to raise awareness of Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS)—two rare neurological disorders that have a profound impact on the daily lives of patients and their families.

We are asking all HSP organizations, patients, friends, families, around the world to take action and help make this day a powerful global movement.

Please share the information below, the World HSP Day video, and the World HSP Day website with your members, patients, families, healthcare professionals, and supporters. Encourage them not only to read or watch, but to join, share, participate, and take action.

Join this global movement by:

Sharing the World HSP Day message on social media
Taking part in the international webinar
Organizing or supporting awareness activities
Sharing your personal story
Encouraging others to get involved
Supporting scientific research through a donation
Every voice matters. Every action counts.

Together, across borders, we can raise awareness, strengthen research, and create real change.

On 17 October, Let’s Show the World How HSP and PLS Affect Our Lives.
We invite everyone living with HSP or PLS to share their story on social media.

Post a short video or photo showing how you move—whether walking independently, using mobility aids, or a wheelchair.

By sharing these personal experiences, we can show the world what HSP and PLS mean in everyday life.

Then share this message with your video or photo:

“Dear everyone, for me, walking is a major challenge. For you, helping is just a small step. Will you join the fight against HSP? Visit www.worldhspday.com and make a donation. Every euro goes directly to research.”

Please use the common hashtags:



Please add your own national or organizational hashtags alongside the common World HSP Day hashtags that we use for being part of one united global campaign.

Please also tag your national HSP association, EUROHSP, and Life4HSP.

One Community. One Voice. One Goal.
The success of the first World HSP Day showed what we can achieve when patients and organizations around the world stand together.

On 17 October, let’s unite once again and show that the global HSP and PLS community speaks with one voice.

We may live in different countries, speak different languages, and have different organizations, but we share the same challenges, the same hope, and the same goal.

Let’s stand united.
Let’s raise awareness together.
Let’s strengthen research together.
Let’s fight for a future without HSP and PLS—together.

Watch and Share the World HSP Day Video
Please share the video, the World HSP Day message, and the website with your members, families, healthcare professionals, supporters, and everyone who can help us spread the word.

On 17 October 2026, let’s make sure the world hears our voice.

Together, we are stronger. Together, we can make a difference.

01/09/2026

What do potatoes and trousers have to do with a rare genetic disease? 🥔👖
Potato Pants.

Lori Renna Linton, an English teacher in Vienna, came up with this project together with her students about ten years ago.

During a hike, at the early stages of her condition, Lori stopped to rest and said to her friends, “I feel like I have 10 kg of potatoes in my pants,” trying to explain how increasingly difficult it was becoming for her to walk.

And so, the idea of Potato Pants was born.

Potatoes have since become a powerful symbol for raising awareness of this condition — a rare genetic disease that can affect muscle strength, coordination, and balance.

“The project was created with the aim of making a rare genetic disease more human and easier to understand, helping the wider community appreciate the challenges it can bring through creative experiences that are accessible to everyone.”

Last week, the very first Potato Pants Challenge was launched — will you take part?

People all around the world are already joining in. Here’s how you can get involved:

Find all the details about the Potato Pants Challenge here:
https://sp-foundation.org/potato-pants-challenge/potato-pants-challenge.html

You can also support scientific research by making a donation through Euro HSP Federation if you are in Europe, through the American SP Spastic Paraplegia Foundation

You can nominate your friends and family, take on the challenge yourself, and then tag Euro HSP Federation or SP Foundation on social media.

🥔 Join the challenge. Fill your trousers with potatoes. Share your video. Raise awareness.

Help us raise awareness of HSP (Hereditary Spastic Paraplegia) — known as PSE in Italian — and PLS (Primary Lateral Sclerosis), and support the research that could make a difference to the lives of people living with these conditions.

Let’s put HSP and PLS in the spotlight — one potato at a time!