Runner with Rare Disorder Defies Sunlight Pain to Race Grandma's Marathon

A runner with a rare genetic disorder is training for Grandma’s Marathon in Duluth, Minnesota. Her condition causes severe, painful reactions to sunlight, making outdoor activity a challenge. Despite this, she has already completed eight half marathons and one full marathon. She initially took up running but had to cover up completely to avoid sun exposure. To manage her condition, she would run only at dawn or dusk. Now, she is part of a clinical trial for bitopertin, a drug that lets her run at any time without fear of sunlight.

The treatment has changed her life. She no longer feels the need to hide from the sun or wear bulky protective clothing. She looks forward to running alongside family and friends during the marathon and enjoying the scenery of Lake Superior. Her participation in the trial has allowed her to train more freely. She will take part in the upcoming marathon with greater confidence. The race will mark another achievement in her running journey.