Rearview mirror, side mirror, destination New York
Nervously, Noelle looks around. Rearview mirror, side mirror, left shoulder, while the GPS indicates the desired destination. Hesitantly, the driving school car merges into traffic. Accelerating and steering, braking and downshifting. Or maybe not?
Clutch pressed in too early, and then forgetting to check her right side again. The sheer number of actions makes Noelle’s head spin, but she bravely fights her way through, completely trusting her always-smiling instructor.
Noelle has Turner syndrome, and has for 22 years. Difficulty with planning, organizing, and automating new skills are typical characteristics, as are her endless patience, caring nature, and positivity. “Oh, quite well, actually...”, Noelle invariably answers when asked how it went. “...the highway felt really fast, and I’m not exactly sure when I need to downshift. My head is completely full.”
“Just need to clear my head...” Jesse plugs in his AirPods and ties his shoelaces. The exam day took a toll on him, and he’s going for a run. Sports are his passion and source of relaxation. Playing the piano is too. How someone can relax while reading sheet music by Chopin is an absolute mystery to me, but Jesse shifts gears quickly and purposefully. Unconsciously, Jesse has been involved with Turner for 18 years, and during his Biology exam, we talked about it in more detail, together with Noelle.
I tie my shoelaces too. Since Noelle was born, my life has taken many turns. Back then, I didn’t know about Turner. Nothing about the syndrome, the expectations, the risks. The uncertainty was immense. In those first few years, I learned a lot—about Turner, but also about myself. At a certain point, in consultation with the Turner Contact Nederland (Turner Syndrome Association Netherlands), I came up with the plan to raise awareness for Turner syndrome. On one hand, to encourage early diagnosis, and on the other, to be a support network and information channel for parents and girls dealing with Turner.
In 2010, I founded RunningforTurner to raise awareness for Turner syndrome through my athletic goals. Now, 16 years later—nearly a generation further—that need clearly still exists. With a sense of pride, I look at Noelle, her head full from the driving lesson. Getting a driver's license is a goal, but not a given. And I look at Jesse. His fingers fly across the piano keys, his mind is clear. The 10k he just ran is the beginning of his goal, which is also not a given.
Running for Turner started with the New York City Marathon in 2010. To my joy, I have found Jesse willing to join Noelle and me in breathing new life into Running for Turner, going back to where it all began: the New York City Marathon 2026.
Rearview mirror, side mirror, GPS. Sometimes, looking back for a moment is good to know where your destination lies…