Treating Inherited Leukodystrophies

Clinical Location

Eccles Primary Children's Outpatient Services Building

801-213-3599
81 N Mario Capecchi Drive
Salt Lake City, UT 84113

Genetic white matter disorders (inherited leukodystrophies) affect the myelin—or white matter—of the brain, spinal cord, and often peripheral nerves. Myelin is the protective covering of the nerve that helps signals travel through the nerve. There are over 40 known types of leukodystrophy, each affecting different parts of the myelin, causing a range of neurological symptoms.

Established in 2004, our center has cared for and treated hundreds of children and adults with leukodystrophies from all over the country and internationally. We are the center for leukodystrophy care in the Intermountain West.

We accept referrals for evaluation, diagnosis, and treatment of inherited leukodystrophies, for:

  • prenatal and pregnancy counseling,
  • newborns,
  • children,
  • adolescents, and
  • adults.

Requests for referrals should be initiated through our refer a patient page or by contacting Dr. Bonkowsky or Emily Hardy directly by email.

University of Utah Health and Primary Children's Hospital offer a complete range of clinical services, from specialized genetic testing for clinical diagnosis and research; bone marrow and stem cell transplants; physical medicine and rehabilitation services; guest services, and specialists in every pediatric sub-specialty.

Western Leukodystrophy Project

If families are interested, they can enroll in the Western Leukodystrophy Project, one of the largest longitudinal studies of children with leukodystrophies. The program works nationally and internationally on clinical and drug trials with foundations and support groups, including ALD Connect, GLIA (The Global Leukodystrophy Initiative), Hunter's Hope/Leukodystrophy Care Network, and the ULF (United Leukodystrophy Foundation).

Find a Pediatric Neurologist

Leukodystrophy Care Network Center

Clinical Care Coordinator
Emily Maynes Hardy, BSN, RN
emily.hardy@hsc.utah.edu
801-213-7701

Our Leukodystrophy Care Center is operated by University of Utah Health, Department of Pediatrics, and Primary Children's Hospital, Western Leukodystrophy Project and is a Leukodystrophy Care Network (LCN) Center; which meets or exceeds the criteria for LCN certification.

The LCN is a community of affected families, organizations, and medical providers committed to revolutionizing the health and quality of life of individuals affected by leukodystrophies with proactive, innovative, and comprehensive medical care standards and specialized centers. Please visit the LCN website to learn more.

Newborn Screening

Newborn screening for ALD (Adrenoleukodystrophy) will start in Utah in Fall 2019. If you have questions about screening, or have a positive result, please contact us.

Additional Locations

St. Vincent Healthcare

1232 N 30th St
Suite 200
Billings, MT 59101

Pocatello Children's Clinic

1151 Hospital Way
Pocatello, ID 83201