Hanneke likes sports, singing in a choir, and going camping. Her biggest passion is sailing, which she does on her own boat, for fun, but also competitively. She loves seeing her friends, but time is always too short: as she says, living with disabilities can be a job in and of itself. First trained as a building engineer, Hanneke got interested in medical research and is now about to complete her PhD in epidemiology.

Forty-eight years old, Hanneke, who lives in the Netherlands, was diagnosed with SMA as a toddler. She was able to walk short distances until the age of 10, and to stand until 13, when she had surgery to correct her scoliosis. Today, Hanneke uses a powered wheelchair, equipped with arm rests that efficiently help her move her hands. However, she does not have access to any of the available medicines for SMA.

To Hanneke, SMA is a privileged case where medicines are available and, increasingly, accessible to most. But much work is still to be done, and systemic change is necessary. As an epidemiologist, Hanneke sets a curious look onto the new and future landscape of SMA as the recent medical advances transform the community and change lives with SMA, hoping that further improvements come soon.

^{Interview conducted on 24 April 2024. This story was published on 16 July 2024. In May 2024, an agreement that will change access to SMA medicines in the Netherlands was reached. At present, the details of this agreement are currently being worked on. People living with SMA are waiting for the decision to come into effect, with the potential to finally change the access landscape to the better.}