Ingibjörg Gísladóttir, a 49-year-old Icelandic resident in Norway, was diagnosed with ALS in the spring of 2024. The prognosis for survival after diagnosis typically ranges from two to five years, yet her father, who shares the same genetic mutation, has lived for nine years after his diagnosis thanks to the drug tofersen. Unfortunately, Ingibjörg has been denied access to this potentially life-extending treatment by the Norwegian government, which has sparked frustration and desperation in her fight against the disease.

In a heartfelt conversation with Norwegian photographer Olav Svaland, Ingibjörg expressed her strong desire to see her children grow up and to become a grandmother. Acknowledging the limitations imposed by her illness, she candidly conveyed her unwillingness to accept death as she strives to lengthen her life through medical advancements. Her situation highlights the broader issues surrounding access to experimental therapies and the arbitrary decisions made by health systems regarding medication availability.

Ingibjörg's plight not only reflects personal anguish but also raises significant questions about healthcare policies, particularly in how they affect individuals with rare diseases. As she seeks to raise awareness of her condition and advocate for the rights of patients like herself, her story underscores the need for dialogue about how health authorities prioritize and evaluate innovative treatments that could change lives for the better.