Educational Resources

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

Date	Topic	Speaker/Author	Download/View
6/26/2020	4H	Dr. Genevieve Bernard, Montreal Children's Hospital	View
6/25/2020	ADLD	Dr. Quasar Padiath, University of Pittsburgh Dr. Camilo Toro, NIH/NHGRI Lisa Kinsley, Northwestern University	View
6/25/2020	Adult Onset Leukoencephalopathy	Dr. Deborah Renaud, Mayo Clinic Dr. Ali Fatemi, Kennedy Krieger Institute Dr. Wolfgang Koehler, University of Leipzig	View
6/26/2020	Alexander Disease	Dr. Amy Waldman, Children's Hospital of Philadelphia	View
6/27/2020	AMN	Dr. Marc Engelen, Amsterdam UMC Dr. Wolfgang Koehler, University of Leipzig Dr. Stephan Kemp, Amsterdam UMC Dr. Deborah Renaud, Mayo Clinic	View
6/25/2020	Krabbe	Krabbe Connect and United Leukodystrophy Foundation	View
6/26/2020	LBSL	Dr. Amena Smith, Kennedy Krieger Institute Dr. Christina Mertz, Kennedy Krieger Institute Dr. Marc Engelen, Amsterdam UMC	View
6/25/2020	MLC	Dr. Marjo van der Knaap, Amsterdam UMC Dr. Rogier Min, Amsterdam UMC	View
6/26/2020	MLD	Dr. Joshua Bonkowsky, University of Utah Dr. Nicole Wolf, Amsterdam UMC	View
6/27/2020	PMD	Dr. Genevieve Bernard, Montreal Children's Hospital Dr. Nicole Wolf, Amsterdam UMC	View
6/25/2020	Adult Refsum Disease	Kristie DeMarco, Global DARE Foundation Dr. Florian Eichler, Mass. General Hospital	View
6/27/2020	VWM	Dr. Marjo van der Knaap, Amsterdam UMC Dr. Menno Stellingwerff, Amsterdam UMC Dr. Joshua Bonkowsky, University of Utah	View
6/2022	CTX - CTX Alliance	Dr. Austin Larson	View
6/2022	4H	Yaya Foundation for 4H Leukodystrophy	View
6/2022	MLC	MLC Families Foundation	View

General Leukodystrophy (all types) resources

Date	Topic	Speaker/Author	Download/View
6/24/2020	Genetic Counseling FAQs	Peri Cavusgil, MMSc - Emory Genetic Counseling Program	Download
6/24/2020	Remember the Girls Flyer	Taylor Kane	Download
6/24/2020	Remember the Girls Brochure	Taylor Kane	Download
6/24/2020	Family Care	Colleen Kintner - ULF Board of Directors & Family Counselor	Download
6/24/2020	The Biochemistry of Adrenoleukodystrophy (ALD & AMN)	Paul Watkins, MD, PhD - Kennedy Krieger Inst. & Johns Hopkins University	Download
6/26/2020	Diagnosing Leukodystrophies	Dr. Genevieve Bernard, Montreal Children's Hospital Dr. Joshua Bonkowsky, University of Utah	View
6/27/2020	Feeding Tubes	Jackie Heying, Mayo Clinic	View
6/26/2020	Genetic Counseling for the Leukodystrophies	Julie Cohen, Kennedy Krieger Institute	View
6/26/2020	Integrative Medicine	Katherine McDonald, Children's Hospital of Philadelphia	View
6/25/2020	Leukodystrophy 101	Dr. Paul Watkins, Kennedy Krieger Institute	View
6/25/2020	Patient Focused Drug Development	Krabbe Connect	View
6/27/2020	Physical Therapy	Jennifer Keller, Kennedy Krieger Institute Dr. Kathy Zackowski, Kennedy Krieger Institute	View
6/27/2020	Respirators and Hypoventilation	Dr. Nadir Demirel, Mayo Clinic	View