The ULF is dedicated to providing educational materials to keep the leukodystrophy community well-informed. This page will be updated periodically as we continue to gather additional materials, and as the materials themselves are updated. Some materials were written specifically for the ULF, but others come from our partner organizations that we are thrilled to promote their missions to further enrich the leukodystrophy community.

Type Specific Resources

DateTopicSpeaker/AuthorDownload/View
6/26/20204HDr. Genevieve Bernard, Montreal Children's HospitalView
6/25/2020ADLDDr. Quasar Padiath, University of Pittsburgh

Dr. Camilo Toro, NIH/NHGRI

Lisa Kinsley, Northwestern University
View
6/25/2020Adult Onset LeukoencephalopathyDr. Deborah Renaud, Mayo Clinic

Dr. Ali Fatemi, Kennedy Krieger Institute

Dr. Wolfgang Koehler, University of Leipzig
View
6/26/2020Alexander DiseaseDr. Amy Waldman, Children's Hospital of PhiladelphiaView
6/27/2020AMNDr. Marc Engelen, Amsterdam UMC

Dr. Wolfgang Koehler, University of Leipzig

Dr. Stephan Kemp, Amsterdam UMC

Dr. Deborah Renaud, Mayo Clinic
View
6/25/2020KrabbeKrabbe Connect and United Leukodystrophy FoundationView
6/26/2020LBSLDr. Amena Smith, Kennedy Krieger Institute

Dr. Christina Mertz, Kennedy Krieger Institute

Dr. Marc Engelen, Amsterdam UMC
View
6/25/2020MLCDr. Marjo van der Knaap, Amsterdam UMC

Dr. Rogier Min, Amsterdam UMC
View
6/26/2020MLDDr. Joshua Bonkowsky, University of Utah

Dr. Nicole Wolf, Amsterdam UMC
View
6/27/2020PMDDr. Genevieve Bernard, Montreal Children's Hospital

Dr. Nicole Wolf, Amsterdam UMC
View
6/25/2020Adult Refsum DiseaseKristie DeMarco, Global DARE Foundation

Dr. Florian Eichler, Mass. General Hospital
View
6/27/2020VWMDr. Marjo van der Knaap, Amsterdam UMC

Dr. Menno Stellingwerff, Amsterdam UMC

Dr. Joshua Bonkowsky, University of Utah

View

General Leukodystrophy (all types) resources

DateTopicSpeaker/AuthorDownload/View
6/24/2020Genetic Counseling FAQsPeri Cavusgil, MMSc - Emory Genetic Counseling ProgramDownload
6/24/2020Remember the Girls FlyerTaylor KaneDownload
6/24/2020Remember the Girls BrochureTaylor KaneDownload
6/24/2020Family CareColleen Kintner - ULF Board of Directors & Family CounselorDownload
6/24/2020The Biochemistry of Adrenoleukodystrophy (ALD & AMN)Paul Watkins, MD, PhD - Kennedy Krieger Inst. & Johns Hopkins UniversityDownload
6/26/2020Diagnosing LeukodystrophiesDr. Genevieve Bernard, Montreal Children's Hospital

Dr. Joshua Bonkowsky, University of Utah
View
6/27/2020Feeding TubesJackie Heying, Mayo ClinicView
6/26/2020Genetic Counseling for the LeukodystrophiesJulie Cohen, Kennedy Krieger InstituteView
6/26/2020Integrative MedicineKatherine McDonald, Children's Hospital of PhiladelphiaView
6/25/2020Leukodystrophy 101Dr. Paul Watkins, Kennedy Krieger InstituteView
6/25/2020Patient Focused Drug DevelopmentKrabbe ConnectView
6/27/2020Physical TherapyJennifer Keller, Kennedy Krieger Institute

Dr. Kathy Zackowski, Kennedy Krieger Institute
View
6/27/2020Respirators and HypoventilationDr. Nadir Demirel, Mayo ClinicView
Scroll to Top