Hello, I'm Ivo Duchenne,

My life is significantly influenced by Duchenne, a muscular dystrophy that challenges me daily, both physically and mentally. Although the path isn't always easy, I believe in strength, connection, and creating meaning—precisely by being who I am.

I proudly live in Rotterdam and the surrounding area (or "living in..." depending) and, with great perseverance, have completed two (level 3 and level 4 programs at Albeda College. Although I'm increasingly dependent on support and resources, I don't let myself be limited by what I can't do, but rather inspired by what I can do and what I can mean to others.

A key part of my mission is raising awareness:

Since december of 2024 I visit schools to give guest lectures about Duchenne, to engage in conversation, answer questions, and dispel misconceptions. I want people to understand that this disease primarily brings physical limitations, but that my spirit, my dreams, my desires, and my personality are intact.

Since april of 2026 I also conduct interviews and that is my ny main activity, because I think it's important, it gives me energy and I really like to do it. My guests so far are: singer Jason Paige, former world kickboxing champion Gökhan Saki, voice actress Marlies Somers and musician Jan van Bijnen.

I also work through social media and documentaries to share information, support research, and connect others in similar situations. I believe that by speaking, sharing, and being visible, the world becomes a little more understanding, a little kinder.

What drives me is not pity, but hope—hope for better care, hope for more knowledge, hope for understanding. And above all: living with meaning, despite limitations. I am who I am, I do what I can, and I believe that is enough.