Skip to main content
Mother, Caregiver and Duchenne Advocate

Hulda Svansdóttir

Hulda Svansdóttir is a mother of three, caregiver and Duchenne advocate from Iceland. Hulda’s son Ægir was diagnosed with Duchenne when he was just four and a half years old. In response to Ægir diagnosis, Hulda knew she had to re-set her mindset to overcome the grief and limitations of the disease, and instead decided to seize positive experiences and opportunities for her son and the family. This mindset shift led to many wonderful and creative endeavors all connected to raising awareness among the community and helping other families affected by Duchenne.

Hulda’s fusion of energy and creativity that led to ‘Dancing for Duchenne’ turned into a magnet for drawing in support from the community in Iceland, and beyond.

But this was just the start… Learn more about Hulda’s endeavors and her tremendous contribution to lives of people with Duchenne.

Photo of Hulda hugging a child.