Could you briefly introduce yourself?
My name is Edwin van Miltenburg. I’m married to Daniëlle, and we’re the parents of Lynn (16) and Glenn (14). We live together in Soest with two large Maine Coon cats: Puck (the smallest) and Rossi (who has a red stripe and is named after MotoGP rider Valentino). I run my own business providing organizational and operational consulting for sports facilities. I balance a busy work and family life with motorcycling, sailing, and administrative duties for the OOG in OOG Association and the Retinoblastoma Working Group.
What made you decide to join the OOG in OOG Association?
Our involvement with the Retinoblastoma Association of the Netherlands and later with the OOG in OOG Association had a sad origin: our son Glenn was diagnosed with retinoblastoma. He was diagnosed in 2010. Glenn was only 10 weeks old at the time. We found ourselves on a rollercoaster of medical appointments and procedures. It was an incredibly difficult time. Our son lost his right eye and now has a prosthetic eye.
Fortunately, over time, his prognosis turned out to be good. We felt very connected to the retinoblastoma team in Amsterdam. We then worked to further improve the care and support available. One thing led to another, and in 2015, together with Prof. Dr. Moll, we officially founded RBVN. The goal was to ensure that the Retinoblastoma Family Days could continue. We are still closely involved in organizing the Family Days. In 2022, RBVN was integrated into the OOG in OOG Association. And so, I am now active as a volunteer within the OOG in OOG Association.
What volunteer role do you have at OOG in OOG, and what does it involve?
I am a general board member specializing in retinoblastoma, and I am also actively involved in the Retinoblastoma Team. In addition, I maintain all national and international contacts with the Retinoblastoma Team in Amsterdam and other patient organizations.
What impact has this condition and the ocular prosthesis had on your lives?
An incredibly profound impact that’s actually impossible to put into words. Especially in that initial phase, it was a crushing blow—a sad and difficult time. Fortunately, his prognosis was relatively favorable afterward. As strange as it may sound, Glenn’s illness also brought us a lot. As the medical treatment became less and less of a focus, we had more room for other things. Because of that, we got to know many people from all over the world and experienced a lot. Well, as Cruyff said: “Every disadvantage has its advantage.”
What do you like about being a volunteer?
The sense of fulfillment and the feeling that you’re making a difference. It goes beyond just my own situation, my son’s, or our family’s. As a volunteer, I help improve retinoblastoma care and, together with others, create a space where we can all come together to talk about it and feel fully understood. That’s a wonderful feeling.
What message would you like to share with our readers?
Many hands make light work—and your ideas and initiatives make it even easier! We get a lot done with just a few people. If the OOG in OOG Association had more volunteers willing to take on small tasks or be available from time to time, it would be more enjoyable for everyone. Are you creative? Do you know how things could be improved? Do you have ideas for activities or better care? Let us know! You’re more than welcome to join us.
Are you in?
Would you like to help support our charity? We’re always looking for new, enthusiastic people to join one of our volunteer teams. Send an email to vrijwilligers@ver-ooginoog.nl, and we’ll work together to figure out what you’d like to do.
