Leukodystrophy Care Program

The Leukodystrophy Care Program is a multidisciplinary program developed to provide the best possible comprehensive care to patients with leukodystrophies and their families at every stage of their disease. It is our firm belief that treatment is always possible, even when there is no definitive cure, and that it should be delivered in a compassionate setting with the needs of both the patient and the family members given the highest priority.

Leukodystrophies We Treat

We evaluate and care for patients with every form of leukodystrophy including, but not limited to:

  • Krabbe disease
  • Metachromatic leukodystrophy
  • Adrenoleukodystrophy
  • Alexander disease
  • Canavan disease
  • Pelizaeus-Merzbacher disease
  • Vanishing white matter disease
  • Undiagnosed leukodystrophies

Team

The core clinic team includes:

  • Jennifer Rubin, MD | Child Neurologist and Clinic Co-Director
  • Barbara K. Burton, MD | Medical Geneticist and Clinic Co-Director
  • Jessica Nicoll, MS | Clinic Coordinator and Genetic Counselor
  • Melanie Rak, MD | Pediatric Physiatrist
  • Soo Shim, MSW | Social worker

Consultation is available as needed from other specialists with expertise in treatment of patients with leukodystrophies. These include a pediatric pulmonologist, pediatric ophthalmologist, pediatric surgeon, pediatric endocrinologist, physical therapist, occupational therapist and speech therapist.

Specialized services available include hematopoietic stem cell transplantation, rapid evaluation of infants identified through newborn screening, and evaluation and genetic counseling of relatives of affected individuals.

Lurie Children's is a Leukodystrophy Care Network​ (LCN) Certified Center, meeting or exceeding Criteria LCN Center Certification. 

LCN is 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. To learn more, please visit the LCN website​​. 

What to Expect

Regular follow-up occurs in the Leukodystrophy Care Clinic, where patients are seen on the same day by multiple specialists who work together to develop a comprehensive care plan. Reports of clinic visits, including recommendations for care, are shared with referring physicians and families.

Appointments

Appointments are available urgently for patients in need of an initial evaluation or assessment of an urgent complaint. To request an appointment or make a referral, please call Jessica Nicoll, Clinic Coordinator, at 312.227.6123.