Strength in Every Step
Introduction
Sometimes something special happens in a conversation — not between doctor and patient, but simply between two people who truly meet each other. That is exactly how it was for us. What started as conversations about pain, recovery, and limitations soon grew into discussions about strength, perspective, and growth.
That openness and resilience touched something essential. It showed that setbacks do not only take things away, but can sometimes also give something back: a new beginning, a sharper sense of what truly matters. Right there, in that mutual inspiration, something started to move — both literally and figuratively.
Because what neither of us ever expected, happened: my occupational physician, Job, is going to run a marathon for me.
In this special blog — written together — we will take you along in the story behind that decision. A story about collaboration, trust, and what can arise when two worlds truly connect.
Job, when and why did you decide to run a marathon for me?
Sometimes you meet someone who stays with you — not because of the severity of their symptoms, but because of the strength with which they face life. That is how I met Robin, a client with neuralgic amyotrophy, a rare and impactful neuromuscular disease that turned her life upside down from one day to the next. What began as a period of pain and loss of control grew into a story of resilience, connection, and personal growth.
In our conversations, I came to know her as someone who never gets stuck in adversity, but instead uses it as fuel for change. Where others might primarily see limitations, she sees opportunities to move closer to who she truly is. Her positive mindset is contagious — for her recovery, her surroundings, and also for me as a physician.
I learned about the illness from textbooks, but through Robin I learned what it truly means to live with it. Not only the medical side, but especially the way she keeps going — living, laughing, and appreciating the moments that do exist. She manages to turn setbacks into a push forward toward personal growth. That is exactly where we connected — in the search for strength and meaning. It led not only to a good therapeutic relationship, but more importantly to a genuine human connection.
That meeting also made me think. How is it possible that in 2025 there is still so little research into the causes and treatment of NA? I do not have direct influence over that, though I can contribute in another way. So I decided to put my running miles to use to raise money for research into neuromuscular diseases. Because people living with a muscle disease deserve not only recognition for their resilience, but also perspective — medically, personally, and socially.
Robin, what does this mean to you?
When I heard this, I honestly didn’t know what to say. So many things rushed through my mind. Someone running a marathon for me? It felt so special — almost unreal. I was so overwhelmed that I even forgot whether he was going to run in Florida or Florence, haha.
I still sometimes find it difficult to grasp that I have a rare muscle disease, and that there are people who want to take action precisely because of that. It deeply moves me.
What made it even more special is that I had spoken to Job only twice before. In those conversations, I noticed that what mattered most to him was my mindset — how I deal with things, my positive outlook, and my blog. My illness was never the focus, and that was exactly what I loved so much. It felt genuinely real.
As I wrote earlier in my blog, that is precisely what I want to show with Strength Through Rarity: that you can draw strength from something rare, that you can inspire others, and maybe give them that small push to finally do something they have been postponing. Because you never know when life might suddenly take a different turn.
Our Goal
What we want to share with this story goes beyond a marathon or a doctor-patient relationship. It’s about what can emerge when you truly meet one another — not as doctor and patient, but as two people who see, hear, and inspire each other.
Ultimately, it’s not about roles, titles, or diagnoses, but about what we share as human beings: resilience, curiosity, and the will to keep growing, despite — or perhaps because of — adversity.
If our story can do one thing, we hope it plants a small seed: to see differently, to seek connection, and to give something meaningful to one another.
Sometimes, the greatest reward isn’t crossing the finish line, but moving forward together along the way.
Our Mission
Curious about what we hope to achieve with our campaign for the Princess Beatrix Muscle Foundation?
Click the link below to discover how we’re supporting this special cause.
Whether you want to join in, follow our journey, or simply find a dose of inspiration —
your involvement makes all the difference.
We’d Love to Hear From You
Connection creates strength, and strength makes change possible.
What feels natural to us — collaborating without hierarchy, but with trust and equality — is what makes this journey so special.
We’re really excited to hear your thoughts on this.
Do you have a question, a comment, or just want to share your reaction to this unique collaboration, our goal, the campaign page, or the marathon? Let us know in the comments below!
In our next blog, we’ll answer your questions and give an update on how far we’ve come in reaching our goal for the Princes Beatrix Spierfonds.
Thank you for reading along and moving forward with us.