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.
Ann & Robert H. Lurie Children’s Hospital of Chicago
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
The LCN Steering Committee includes at least one family advocate from each of the major Leukodystrophies; provides leadership, direction and oversight for the LCN.
February 12, 2016 Steering Committee
Greg Benton, Chad & Lisa Borodychuk,
Patti Chapman, Matt & Lauren Hammond,
Jeff Leonard, Robert & Kristen Malfara,
Phil & Amy May, Dave & Lindey McIntyre,
Bob Rauner, Elisa Seeger,
Kaprice Shullanberger, Nathan & Sarai Taylor, Mike & Jenna Wallace
HUNTER'S HOPE SUPPORT TEAM
CEO, LCN Executive Director
Programs Director, LCN Director
LCN Family Support