Euro HSP Federation

19/07/2026

Congratulations!

11/06/2026

Raising funds for Hereditary Spastic Paraplegia.
Thank you Life4HSP

🎬💙 Wat een geweldige actie van Ladies Circle! 💙🎬

Met hun filmavond afgelopen vrijdag hebben zij maar liefst € 2.395,- opgehaald voor Life4HSP. Een prachtig resultaat waar we enorm dankbaar voor zijn.

Onze hartelijke dank gaat uit naar alle leden van Ladies' Circle Schouwen Duiveland voor hun inzet, enthousiasme en betrokkenheid. Ook dank aan iedereen die aanwezig was en heeft bijgedragen aan deze bijzondere avond. Dankzij jullie steun kunnen we ons blijven inzetten voor onze missie.

Samen maken we het verschil. 💙

💙✨

11/05/2026

Life4HSP

02/04/2026

As Easter approaches, I would like to take a moment to send my warmest wishes to each of you.

Whether this season holds a religious meaning for you or simply represents a time of renewal and hope, it offers an opportunity to pause, reflect, and reconnect with what truly matters. In a time when the world is facing many challenges and uncertainties, I believe it is more important than ever to nurture a spirit of peace, solidarity, and shared humanity.

To our community, especially those living with HSP and PLS, I extend my deepest thoughts of support and closeness. Your strength, resilience, and commitment continue to inspire all every day.

May this period bring moments of calm, kindness, and connection — and may it remind us all of the importance of Standing Together.

Wishing you and your loved ones peace, hope, and gentle renewal.

M.

17/03/2026

Tom Wahlig Stiftung

An incredible symposium is behind us – and we are deeply grateful.

Two inspiring days of exchange, new insights, and meaningful conversations about Hereditary Spastic Paraplegia (HSP) have come to an end.

We would like to express our heartfelt thanks to everyone who made this symposium possible:
our speakers, researchers and clinicians, patients and families, all participants joining us on site and online – and the dedicated organizing team working tirelessly behind the scenes.

A special thank you goes to our host, the Knappschaft Kliniken Recklinghausen, for their support and excellent collaboration.

Events like this highlight the importance of international cooperation, open dialogue, and shared commitment to advancing research and improving perspectives for people living with HSP.

Thank you to everyone who contributed to making this symposium so meaningful.

07/03/2026

Our scientific advisor taking some time to relax with Estelle’s book on HSP, recharging before participating in the HSP Symposium organized by the Tom Wahlig Stiftung, starting next Wednesday.

It will be a valuable opportunity to meet researchers dedicated to HSP, exchange ideas, and continue working together toward better understanding and solutions for this condition. He will be presenting also the winner of the Adolf Struempell Prize 2026, Dr. Giulia Guarato. Emedea La Nostra Famiglia

Research moves forward through collaboration, passion, and moments like these.



You can find Estelle's book : https://amzn.eu/d/0hBwjNaY

"I’ve just published my book on Amazon. As a physiotherapist, I never imagined that one day I would be writing about my own journey. Developing hereditary spastic paraparesis (HSP) as an adult changed my life — but it didn’t take away my purpose. Instead, it pushed me to search for solutions, not only for myself, but for others living with HSP.

This self-help book comes from both my professional knowledge and my personal experience. The cover features a drawing I created myself, making this project even more meaningful to me." Estelle Marshall

03/03/2026

Euro-HSP is pleased to announce that the Adolf-Struempell-Prize-2026 is awarded to Dr. Giulia Guarato ( Emedea La Nostra FamigliaIRCCS E. Medea , Italy) for the paper entitled " Naringenin and SMER28 target lysosomal reformation and rescue SPG11 and SPG15 hereditary spastic paraplegia phenotypes".

The prize will be presented at the Tom Wahlig Symposium in Recklinghausen , Germany on March 13.https://www.hsp-info.de/fileadmin/Symposien/Recklinghausen_2026/TWS_Symposium_Program_2026.pdf

The study investigates the potential therapeutic effect of multiple target compounds for the treatment of the HSP subtypes SPG11 and SPG15 in a genetically modified animal model (drosophila, a small fly). Both subtypes share a common pathophysiological mechanism. The mutation causes an impairment in the function of the lysosomes – the cleaning and recycling units of cells. For SPG11 and SPG15 neurogeneration appears to be related to lysosomal malfunction. Two compounds – Naringenin and SMER28 – restored lysosomal parameters and improved locomotor function of the flies.

From the perspective of Euro-HSP in particular Naringenin might be of high interest. It is a natural compound being related to the consumption of citrus fruits. Furthermore, it is in use as a dietary supplement. Due to its antioxidant and anti-inflammatory effect Naringenin is known as a neuroprotective compound.

For translating finding obtained in a gene modified tiny fly to human patients some important work is strongly needed. This involves the identification of a safe but hopefully therapeutically beneficial dose for long-term therapy. This requires the quantification of potential curative effects by objectively accessible parameters in future clinical trials. However, when balancing the relatively low risk profile of Naringenin against the fatal outcome caused by untreated neurodegeneration in SPG11 and SPG15 such studies appear strongly needed and justified.

Euro-HSP is deeply committed to encourage and support this important work in the near future.

03/03/2026

Euro-HSP is pleased to announce that the Adolf-Struempell-Prize-2026 is awarded to Dr. Giulia Guarato ( Emedea La Nostra FamigliaIRCCS E. Medea , Italy) for the paper entitled " Naringenin and SMER28 target lysosomal reformation and rescue SPG11 and SPG15 hereditary spastic paraplegia phenotypes".

The prize will be presented at the Tom Wahlig Symposium in Recklinghausen , Germany on March 13.https://www.hsp-info.de/fileadmin/Symposien/Recklinghausen_2026/TWS_Symposium_Program_2026.pdf

The study investigates the potential therapeutic effect of multiple target compounds for the treatment of the HSP subtypes SPG11 and SPG15 in a genetically modified animal model (drosophila, a small fly). Both subtypes share a common pathophysiological mechanism. The mutation causes an impairment in the function of the lysosomes – the cleaning and recycling units of cells. For SPG11 and SPG15 neurogeneration appears to be related to lysosomal malfunction. Two compounds – Naringenin and SMER28 – restored lysosomal parameters and improved locomotor function of the flies.

From the perspective of Euro-HSP in particular Naringenin might be of high interest. It is a natural compound being related to the consumption of citrus fruits. Furthermore, it is in use as a dietary supplement. Due to its antioxidant and anti-inflammatory effect Naringenin is known as a neuroprotective compound.

For translating finding obtained in a gene modified tiny fly to human patients some important work is strongly needed. This involves the identification of a safe but hopefully therapeutically beneficial dose for long-term therapy. This requires the quantification of potential curative effects by objectively accessible parameters in future clinical trials. However, when balancing the relatively low risk profile of Naringenin against the fatal outcome caused by untreated neurodegeneration in SPG11 and SPG15 such studies appear strongly needed and justified.

Euro-HSP is deeply committed to encourage and support this important work in the near future.