Stephanie is passionate about accelerating research, building strategic partnerships, and expanding awareness of Alexander disease.

Her daughter, Emory, spent years battling unexplained nausea, vomiting, and failure to thrive before a hospitalization in April 2025 finally led to a brain MRI — and an answer: Alexander disease. That diagnosis brought Stephanie to the End AxD community and to Dr. Waldman's care. Emory is currently stable on medication, though her family knows there's no guarantee it will keep working, and no backup plan if it stops.

Stephanie is focused on developing sustainable fundraising initiatives, cultivating relationships with donors, and connecting researchers, industry leaders, and families to help advance treatments and, ultimately, a cure. She believes meaningful progress happens when science, advocacy, and community work together.

Emory is bright and vibrant — she loves hockey, her friends and family, animals, and school, and anyone who meets her falls in love with her. Outside of End AxD, Stephanie lives in Minnesota with her family and enjoys spending time outdoors, gardening, cooking, and continuously learning. She is honored to serve the Alexander disease community and is committed to helping End AxD make a lasting impact for patients and families around the world.