Our relationship Rob was one of our guests at the ALS Dinner last year; he too was particularly emotional that evening, but also driven to do something. Like too many others, Rob also has a direct acquaintance confronted with ALS: his friend Arjan. A friendship (between Rob and Arjan) of more than 45 years. Disbelief, powerlessness, help… you want to do everything you can, but yes, it's never enough for a cure. We spoke with Arjan (a friend of Rob's) about what the disease does to your life and why research is so urgently needed.

The moment everything changed
Arjan went to the doctor about his ankle, nothing more than that. It was only in the hospital corridor that he saw it written: neurologist. "For an ankle?" he thought. At the end of that first conversation, the doctor asked him to bring a family member along next time. Nothing more needed to be said. Arjan already knew: "This isn't good."

At that follow-up appointment in 2023, the word fell: the doctor was taking ALS into account. Further tests were needed afterward to confirm it definitively. In 2024, the diagnosis of ALS was confirmed.

"I want to be there for the important moments in my son's life. I'll do anything for that."

What the disease does to his body
Since then, a lot has changed, step by step. First his left leg gave out, then came a wheelchair for outdoors, followed by a cane, a tripod cane, and a walker for indoors. By now his left arm is also much weaker, and he's starting to feel the first signs on the right side too. Still, Arjan doesn't simply accept it. "As long as I can still do it myself, I'll keep using my muscles," he says.

Everything for your child
The hardest moment for him wasn't the diagnosis itself, but telling his son Nick, now 11 years old. At first Nick didn't want to know which disease his father had, and eventually found out on his own: at school, through a friend, through a commercial in the car. In his own time and his own way, he let it be known that he knew.

Arjan himself found it terrible the first time he sat in a mobility scooter, but Nick looked at it and thought it was great. He could ride around in it happily. That triggered something. "If my son can look at it that way, why should I make it so hard on myself?" That changes how you think about a lot of things. His goal since then has been simple: "I want to be there for the important moments in my son's life. I'll do anything for that."

Friends who are simply there
When Rob got the phone call from Arjan that it was ALS, he didn't know what to think for a moment. His friend, who worked out four or five times a week and lived a healthy lifestyle. How could this happen? Other friends reacted the same way: disbelief that someone so fit and strong could be struck by something like this. But after the initial shock, no one stood by and did nothing.

What stands out is that everyone has found their own role. When Arjan needs to go upstairs in the evening and needs help with that, friends are there, without it needing to be discussed at length. Every Sunday, friends from the gym also come to train at his house. That gives him the feeling that he's fighting, and not alone. Others take him along to watch football, or step in at moments when things don't quite work out.

To everyone who knows a loved one with ALS, Arjan has one piece of advice: "Don't ask non-committally whether you can do something. Be specific. Offer something that someone can simply say yes to." Asking for help is a skill in itself, especially for someone who used to always be the one offering help.

Hope from research
Besides his son and his friends, there's one more thing Arjan holds on to: the hope that research will come in time. He takes part in trials at the UMC and the ALS Institute and is eager to join new studies as soon as he can.

Lung tests, intake interviews. These are moments that feel more tense than they should, because they determine not only how he's doing, but also whether he still qualifies for the next study. So far his lungs are still good, and for him that's no minor detail: it's usually the lung muscles that ultimately fail in most people with ALS. Every trial he gets to take part in feels like a chance — not just for himself, but also for the time with his son.

"Don't ask non-committally whether you can do something. Be specific. Offer something that someone can simply say yes to."

He doesn't let it get him down. "I think despair is worse than the disease itself. That's why you have to hold on to a bit of hope." That hope comes from his friends, from his son, and from the knowledge that somewhere, research is being done that might, in time, make the difference.

There is no cure for ALS. No doctor can make Arjan better. Only research can ever change that, and that research costs money. Money that too often isn't there, while every month counts. For Arjan. And for the trials he so badly wants to take part in.

That is why Quantum Leben has supported Stichting ALS in various ways for years, and why we are glad to be present to do the same together with the entire financial services sector at the ALS Financial Dinner!