• Every Child Deserves the Highest Quality of Care
  • Lack of a Cure should NOT result in Lack of Care
  • The Leukodystrophy Care Network...
  • Enhances and Celebrates...
  • Life!
Every1 Child2 Deserves3 a Fair Chance4 at Life5

If you are affected by Leukodystrophy and need medical help, please contact Hunter's Hope.


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Revolutionizing 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.

Learn why Hunter Kelly's life was the inspiration for the LCN Vision.

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
  • Multidisciplinary Team approach
  • Exceptional Standards of Care
  • A commitment to increasing value and Continuously Improving Quality.

STRATEGY

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

LCN CENTERS

The Leukodystrophy Care Centers (LCC) in the LCN will provide:

  • Early Diagnosis - Definitive diagnosis, variation and progression.
  • Treatment - Information and referrals of the most current treatment options.
  • Preventive Medicine – Multidisciplinary Approach to preventing and managing the many complications that may arise from Leukodystrophies.
  • Symptom Management - Educate the family and child’s local medical team on treatment of symptoms that typically arise at the various stages of growth and disease progression and provide care and/or work closely with the local medical team to provide care.
  • Emotional Support - Encouragement and invitations to benefit from various family programs offered by Hunter’s Hope and other advocacy groups from the World Leukodystrophy Alliance.

 

 

 

CANDIDATE CENTERS

Ann & Robert H. Lurie Children’s Hospital of Chicago

Children’s National

Duke Children's Hospital

Emory University/Children’s Healthcare of Atlanta

Kennedy Krieger Institute

Lucile Packard Children’s Hospital at Stanford

Massachusetts General Hospital

Nemours/DuPont Hospital for Children

Texas Children’s Hospital

The Children’s Hospital of Philadelphia

The Hospital for Sick Children

University of Minnesota Masonic Children's Hospital

University of Rochester Medical Center

University of Utah/Primary Children’s Hospital

Vanderbilt University/Monroe Carell Jr. Children’s Hospital

Women & Children’s Hospital of Buffalo
 

STEERING COMMITTEE

The LCN Steering Committee includes at least one family advocate from each of the major Leukodystrophies; provides leadership, direction and oversight for the LCN.  

LCN Steering Committee 021216

February 12, 2016 Steering Committee 

Greg BentonChad & Lisa Borodychuk,
Patti ChapmanMatt & Lauren Hammond
Jeff Leonard, Robert & Kristen Malfara
Phil & Amy MayDave & Lindey McIntyre
Bob RaunerElisa Seeger
Kaprice ShullanbergerNathan & Sarai Taylor, Mike & Jenna Wallace

 

HUNTER'S HOPE SUPPORT TEAM
Jacque Waggoner
CEO, LCN Executive Director
Anna Grantham
Programs Director, LCN Director
Kathleen Scott
LCN Family Support
Melissa Jablonski
LCN Assistant
PARTNERS                                   
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