Linde in Action for HSP: My 125 km Walk

How nice that you’ve found your way to this blog. I’m Linde, and I’d love to tell you about my action for Life4HSP. I hope my story inspires you to take action as well.

A little over two years ago, we found out that my father has the hereditary muscle disease HSP (Hereditary Spastic Paraplegia). And you’ve probably ended up on this blog because, in one way or another, you are also connected to this condition. Since the founding of the Life4HSP foundation, I knew I wanted to do something. I wanted to help raise money for research and create more awareness about HSP. That’s why, in the summer of 2025, I walked 125 kilometers — the Gelukkigerwijspad — together with friends and family. Maybe you’re also considering taking action, but you’re not sure what to do yet, or you’re still exploring how to set up your own initiative.

Do something that suits you 

These kinds of things may sound obvious, but choose an action that truly suits you. Something you enjoy, something that energizes you. Maybe you need to prepare or train for it — if you like that, it’s no problem. But if it feels like something you have to do, it will take away the joy of preparing for your action.  

I spent some time thinking about what kind of action I wanted to take. Baking something? Cycling the Pieterpad? It wasn’t until I talked it over with my parents that I realized walking was the best choice for me. I walk often, have done multi-day hikes before, and I know plenty of people who enjoy joining in. 

By choosing a walking challenge, I enjoyed organizing the routes, the overnight stays, and who would join on which day. That enthusiasm was contagious. It made people curious, and soon they wanted to take part in the action as well. 

Engage your entire network  

Your network, the people closest to you, are usually the ones who donate. By engaging them, they will also involve their own networks, helping your campaign grow faster than you expect 😉. For me, this resulted in raising almost €6,000. Please don’t be discouraged by that amount; every donation is valued.  

Maybe people share this feeling, because I wondered: who is really waiting for yet another charity campaign? But there was no need for that doubt. I noticed that people are happy to help, especially when they see that it is something that personally affects you. They might not donate for the cause itself, but for you — and that is valuable too.  

More than just money 

For me, the campaign was about more than raising money. Afterwards, I felt a strong connection with the people who supported me and who gave me so much encouragement. Through the campaign, I also created opportunities to talk about HSP. These conversations were sometimes sad, but mostly very beautiful.  

Stay visible  

The reality is that people will probably forget your campaign quickly. Try to prevent that. Share what you are doing during your campaign — post photos or short videos. This keeps your campaign “alive” and visible. What worked well for me was keeping the campaign page open both before and after the action. That way, people have more time to donate, or even donate more than once.  

You can do this too 

My campaign raised a wonderful amount. How? I informed people about the campaign on my birthday and asked them for a donation. That was the best birthday gift for me. It felt unusual to ask people for money, but it gave my campaign a great start (and I reached my initial goal almost immediately). So I adjusted the target amount. I really had no idea what to expect.  

From this experience, I learned that anyone can do something. You don’t have to be a top athlete or a professional fundraiser. It’s about your intention and the step you dare to take. Whether you organize a bake sale, do a sponsored walk, or collect deposit bottles — it truly makes a difference! 

I hope my experience has helped you. If you want to know more, share your story, or brainstorm about which campaign suits you best, email media@life4hsp.com they will forward your email to me. Love, Linde  

Would you like to create your own campaign? You can do so via this page