Our goals
With Life4HSP, we want to achieve two goals: a treatment for HSP and a better quality of life for people with HSP. Much research is still needed for that. Will you help us make it possible?
Good news: progress towards a treatment
Recent research shows that new medicines can slow down or even stop HSP. That is of course great news for people with HSP and their families. But: this development is still in its infancy. Much more research is needed before there is an effective treatment. To make that possible, Life4HSP and Euro-HSP together with the Paris Brain Institute.
Focus on the most severe variants
The Paris Brain Institute conducts groundbreaking research into nervous system disorders. Scientists at the institute have started a research project to develop medicines for HSP. Initially for the variants SPG11 and SPG15, which can lead to severe disability. Depending on how the research develops, doctors from the Radboudumc in Nijmegen may be involved in the drug development
Video: Bart van de Warrenburg, Neuroloog en hoogleraar Zeldzame en Erfelijke bewegingsstoornissen aan het Radboudumc/ de Radboud Universiteit
Huge impact
People with the HSP variants SPG11 and SPG15 lose their mobility and independence. This has a huge impact on their lives. Imagine that you or your partner ends up in a wheelchair, can no longer climb stairs, or becomes incontinent. What about work? The household? Grocery shopping? And all those other things that were always taken for granted, but now are not anymore?
Urgent need for treatment
Both people with the most severe variants of HSP and their families have an urgent need for treatment. That’s why, in drug development, we initially focus on these variants. Will you also contribute to groundbreaking research for an effective medication for these forms of HSP?
Improving quality of life
At the moment, we cannot yet cure HSP, but we can improve the quality of life for people with HSP. That is extremely important because it has an immediate effect. That’s why we work closely with doctors from the Radboudumc. They research innovations and tools that help people with HSP get the most out of their lives.
Will you also contribute to solutions for a better life for people with HSP?
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