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 affecting the nervous system. In 1968, the team at the University of Minnesota was the first in the world to successfully perform a bone marrow transplant (BMT) using a non-twin donor to treat a boy with severe combined immunodeficiency disease (SCID).
Since that first successful transplant, the University quickly applied the transplant process to patients with leukodystrophy. We have performed transplants for more than 250 leukodystrophy patients and are one of the largest transplant centers in the world for leukodystrophies. Our comprehensive leukodystrophy center includes specialists from BMT, genetics, neurology, endocrinology, ophthalmology, neuropsychology, neuroradiology, pharmacology, physical therapy, and occupational therapy. This multidisciplinary-team and long-time experience in leukodystrophy 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
Geneticist discusses what having a child identified through newborn screening for ALD means for your entire family
Chloe’s Fight Rare Disease Foundation's mission is to raise funds for rare disease research and to raise awareness for the barriers to care in the rare disease community. Erica and Philip Barnes founded CFRDF in honor of their late daughter, Chloe Sophia Barnes, in order to envision “a world where every child with a rare genetic disease has access to a cure.” Erica Barnes is also an administrator for the Chloe Barnes Advisory Council on Rare Disease.
Gavin Flying For A Cure was created to honor Gavin Quimby (Super Gav) and to bring awareness to Metachromatic Leukodystrophy (MLD). The Gavin Quimby Research Fund has donated to the Leukodystrophy Center to aid in the treatment of children with leukodystrophy.
Knockout ALD organizes and hosts the Run for ALD, Cure the Boys 5K and a one-mile-walk event in Maryland Heights, Missouri, to raise money for our ALD Research Fund. This year, the run will take place on Saturday, November 21, 2020. Please save the date and register here! All funds raised from Run for ALD will directly benefit the University of Minnesota's ALD Research Fund. 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 and has donated research gifts to our Leukodystrophy Center. Additionally, TCJF has generously donated shirts, hats, and books to our patients.
X out ALD is a 501(c)(3) organization dedicated to increasing awareness of adrenoleukodystrophy and supporting research at the University of Minnesota Leukodystrophy Center. Please save the date for the 2020 Outrun ALD Virtual 5K on September 19, 2020! Click here to register.