Comprehensive Care, Novel Therapies & Pioneering Research
Our multidisciplinary team of specialists has unsurpassed, world-class experience in the diagnosis, monitoring and care of pediatric and adult patients with inherited leukodystrophies. The team at the University of Minnesota Masonic Children’s Hospital was the first in the world to treat a patient with leukodystrophy (Globoid Cell Leukodystrophy, or GLD) with bone marrow transplantation. Since that time, we have treated more than 200 leukodystrophy patients with hematopoietic cell transplant (HCT), commonly known as blood and marrow transplant (BMT) and other therapies. Our team continues to have unsurpassed, world-class experience treating patients with lysosomal and peroxisomal disorders affecting the nervous system. Our comprehensive leukodystrophy center includes a team of specialists from BMT, genetics, neurology, endocrinology, neuropsychology, neuroradiology, pharmacology, and physical and occupational therapy. This multidisciplinary team approach ensures that the care we provide best meets the unique needs of each patient and family.
We're Here to Help: Dr. Paul Orchard explains what to do after an ALD diagnosis from newborn screening
Kate Wiens Discusses what having a child identified through newborn screening for ALD means for your entire family
Knockout ALD organizes and hosts the Run for ALD, Cure the Boys 5K and 1 mile walk event in Maryland Heights, Missouri to raise funds for our ALD Research Fund. Last year's event toke place on Saturday, November 16, 2019. Read Nicholas's story here.
The Calliope Joy Foundation supports our Leukodystrophy Center in many ways. TCJF has made it possible to produce two educational videos for ALD newborn screening. We have also received gifts for leukodystrophy research at our center. In addition, our patients have been given shirts, hats, and books.