Hulda Björk Svansdóttir

A Duchenne Silver Lining

One of the silver linings in this Duchenne journey is the people. In our Duchenne community, there are amazing people and organizations offering help. One of those amazing people is my good friend, Hulda Björk Svansdóttir.

Hulda Björk Svansdóttir

Hulda Björk Svansdóttir is the mother of a child with Duchenne. She is also a source of light and love in our community. Hulda is the driving force behind Friday Fun Dancing for Duchenne and Hope with Hulda. And she does all of it for us…the Duchenne community.

If you don’t know Hulda’s name, you’ll definitely recognize her face and her dance moves.

You may already be familiar with “Dancing for Duchenne” – those goofy, uplifting, laughter provoking video clips that magically appear in Duchenne social media on Fridays. They have great music and supportive people just going all out with their dance moves. It’s a quick breather from the daily grind that many of us in the Duchenne community need.

Yes. Hulda is the mastermind behind that. To catch your weekly dose of dancing joy, join Hulda’s group Dancing for Duchenne – Ægis journey.

Hulda is also a very talented poet, who encourages others to transform pain to power.

She writes from experience. She writes from the heart. She writes with love.

Hope with Hulda is a respite for the soul when the Duchenne journey just feels too heavy.

Hulda’s own story inspires and encourages. To hear Hulda’s story in her own words herself, click here. You can also read about Hulda’s journey here.

Thank you so much, Hulda, for all the beautiful gifts you give to our Duchenne community!