Explore This Treatment Program

Overview

The Department of Neurology’s Leukodystrophy Clinic is dedicated to the diagnosis, treatment, education, and support of patients with leukodystrophies. With our promise of lifelong care, we strive to provide our patients with the best treatment and research opportunities throughout all stages of disease. Through a combination of symptom management, accepted treatment options, and emerging therapies and research, we help our patients become engaged with their own care. Each leukodystrophy patient is different and we practice personalized medicine to approach and treat each case in an individualized manner.

The Leukodystrophy Clinic provides comprehensive and multidisciplinary access to physicians, specialists, and researchers in a number of areas. Our large team of experts enables us to provide the best care possible to our patients, regardless of age or condition. Our close relationship with patient advocacy groups helps us stay connected to the leukodystrophy population and ensure that we are offering exceptional care.

Massachusetts General Hospital is a Leukodystrophy Care Network (LCN) Center, meeting or exceeding 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. To learn more, please visit the LCN website.

Research

Research is an important component of the Mass General Leukodystrophy Clinic. We aim to provide our patients access to the most current research endeavors and clinical trials related to the understanding and treatment of leukodystrophies. In particular, we are advancing natural history studies and gene therapy trials for the leukodystrophies (NCT02851862, NCT02851563 and NCT01896102). Through membership in the Center for Genomic Medicine we partake in pioneering genetic research and technology aiming to launch new therapeutics for leukodystrophies.


Additional Members of the Care Team

  • Catherine Becker, RN/NP, Nurse Practitioner (Associate Program Director)
  • Reneé Mendesl, Patient Services Coordinator
  • Albert Misko, MD, PhD, Pediatric Neurology Specialist

Research Coordinators

  • Haley Andonian, BA
  • Camille Corre, BS
  • Madeline DeBono, BA
  • Neha Godbole, BS
  • Natalie Grant, BA
  • Daniel Kelly, BS
  • Samantha Speroni, BA