Hi from Michael, Marie, Oliver, Odin, and Ophelia Adrian in Stillwater, MN! Our ALD journey began in August 2020, when newborn screening identified the condition in our son Odin just five days after birth. It was a hard moment — but thanks to early detection and an amazing care team at the University of Minnesota, we’ve had the chance to stay ahead of this disease.
Today, Odin is doing great — joyful and active. ALD is part of our life, but it's not at the center of it. He completed his 6th MRI in March, continues to be asymptomatic, and participates in the national ALD registry and biomarker research at every visit. His genetic variant is part of the Grey Zone Project, helping researchers better understand how different mutations behave — and hopefully giving clearer answers to families like ours in the future.
We’ve discovered ALD runs deep in our extended family — with over 15 relatives identified — and that’s only strengthened our commitment to spreading awareness, supporting research, and helping other families find early answers. We’re proud to be part of the X out ALD community, doing our small part to move science forward and protect these incredible kids.
