The Hunter’s Hope Foundation Leukodystrophy Care Network (LCN), established in 2015, is a network of medical providers, hospitals, Leukodystrophy organizations and affected families. Our vision is for a world-renowned LCN to exist across the United States, Canada and eventually the world, to provide innovative therapies, treatment options, expert care and information to families affected by these diseases. The medical community will recognize the LCN and its Centers (LCC) as leaders in Leukodystrophies for patients and medical professionals. Centers will be self-sustaining, yet collaborative, networked together to ensure the highest quality groundbreaking care is available for all Leukodystrophy patients today and for generations to come.


To revolutionize the health and quality of life of individuals affected by Leukodystrophies with proactive, innovative, and comprehensive medical care standards and specialized centers throughout the U.S., Canada and eventually the world.

Core Values

The LCN and its Centers will Embrace and Promote…

  • The Highest Quality of Life
  • An attitude that Enhances and Celebrates Life
  • The affected individual’s Abilities and Potential
  • Patient Care as its Primary Focus
  • Long-Term and Comprehensive Care for the prevention of potential complications
  • A Multidisciplinary Team approach
  • Exceptional Standards of Care
  • A commitment to increasing value and Continuously Improving Quality.


The key elements of the LCN’s strategy include the following:

  • Guided by Family Advocates to ensure Patient Centered Care
  • Learn from existing successful Multidisciplinary Care business models
  • Integrate Centers into established hospital systems
  • Utilize Existing Resources where possible
  • World Renowned Experts in Leukodystrophies and Multidisciplinary Care
  • Standards of Care
  • Multidisciplinary Team Model
  • Leukodystrophy Patient Registry
  • Ensure continuous excellence – LCN Advisory Committee
  • Involve Government Agencies, Funders and Other Stakeholders throughout the process
  • Promote education and growth through Public Awareness Campaigns


The LCN is led by a Steering Committee of Family Advocates, supported by Leukodystrophy medical specialists and Hunter’s Hope staff. Learn more here.

Coordinating Center

The LCN is a network of Certified and affiliate Centers, NBS labs, industry partners, patient advocacy organizations, and affected families administered through a Coordinating Center. The Coordinating Center provides facilitation and coordination assistance for medical experts in the LCN and the patient’s local medical teams.

This includes the LCN Center Certification Requirements, LCN Center Agreements, LCN Clinical Practice Guidelines, the Krabbe NBS Council, Monthly Care Coordinator and Steering Committee meetings, connecting patients to LCN Centers, annual in-person meetings, and establishing meaningful partnerships with each stakeholder in the Leukodystrophy Community.