A Norwegian Physiotherapist with FA

“I want my body to be in its best possible condition to fight FA all the way!”


Who: This beautiful, cat-loving, 36-year-old has a strong and supportive family, which includes a dashing Scandinavian husband, parents, two sisters and a brother; one sister is also diagnosed with FA.

What: Gunnhild graduated with a degree in physiotherapy from Luleå University of Technology. Her education helped begin an understanding of her diagnosis with ways to combat symptoms of FA through exercise. Along the way, she discovered this was a perfect opportunity to reach out to the FA community and share what works and what doesn’t work for her by writing a blog.

Where: Gunnhild’s backyard is like jumping into a postcard of the beautiful wilderness of the Scandinavian Peninsula. And it is guaranteed that cold and snow in the county of Møre og Romsdal, Norway won’t stop her! (Side note: she is a four-hour drive to Lilyhammer— also known as the Netflix spin-off of “The Sopranos.”)

When: Her symptoms began in her late twenties; diagnosed in 2009 and married in the same year! Flash forward five years, she now uses two walking sticks and travels often (possibly a means to escape the snow!). One sister lives in Washington, D.C., and her brother lives in Miami. Gunnhild's blog has since brought her in touch with FAmilies worldwide, to name a few: Argentina, Australia, South Africa, and all over the U.S. Why: Beginning her blog in 2011, Gunnhild has aimed to share every experience of her means to fight FA. Her attempts are not just with words, but diagrams or photos or videos to show all of her trials with varying devices, adaptations, exercises— whatever suggestions or research comes her way. Her blog, ExtremeLiving.No is named after how she chooses to live with FA. Her everyday battle has captured an international audience of doctors, therapists, researchers, patients and their families. She is, you guessed it, raising awareness and spreading hope, that with hard work and determination, treatments and a cure for FA can be found!


“I admire and love all of those who raise money and awareness for FA out there and all the incredible researchers who are using their brilliant minds and knowledge to find a treatment for FA. Without having met you, still you are some of the most important people in my life!! Thank you!”


To follow Gunnhild’s incredible journey, subscribe to her blog to receive notifications of new posts by email, and please “like” and share her Facebook page.


“When you read my blog you must remember that I’m not a scientist myself. I write about my own experiences… What works for me might not work for everyone.”

A 'Spotlight' post wiil be featured on the FARA Ambassador Program blog on the third Thursday of each month to recognize some of the people living extraordinarily in the face of Friedreich's Ataxia. We are thankful for everyone working so hard to support the search for effective treatments and a cure! We hope that each post on this blog will be a source of encouragement to you.
Together we WILL cure FA!