ALL TIMES ARE IN EASTERN TIME ZONE
Start	Finish	Topic/Event	Speaker
Tuesday, July 18th
		Medical Symposium, Day One	Moderator: Dr. Robert Thompson Stone
9:00am	9:05am	Welcome
9:05am	9:35am	Krabbe Disease & RUSP History	Dr. Dietrich Matern
9:35am	9:50am	Krabbe Newborn Screening Council	Dr. Joanne Kurtzberg
		State NBS Updates Panel
9:50am	10:00am	New York	Dr. Joseph Orsini
10:00am	10:10am	Illinois	Dr. Joshua Baker
10:10am	10:20am	Tennessee	Gwendolyn McKee
10:20am	10:30am	Ohio	Dr. Margie Ream
10:30am	10:40am	Pennsylvania	Pat Edge
10:40am	10:45am	Kentucky	Dr. Dietrich Matern
10:45am	10:50am	Indiana	Jennifer Weaver
10:50am	10:55am	Georgia	Dr. Stephanie Keller
10:55am	11:00am	New Jersey	Caitlin Russo
11:00am	11:05am	South Carolina	Beth Bair
11:05am	11:35am	Update on HSCT for Krabbe Disease	Dr. Joanne Kurtzberg
11:35am	12:05pm	Update on Gene Therapy for Krabbe Disease	Dr. Maria Escolar
12:05pm	12:20pm	Discussion
1:30pm	2:30pm	NBS Positive for Krabbe Disease - What now?	Dr. Robert Stone
2:30pm	3:00pm	Panel Discussion of NBS for Krabbe Disease: Sensitivity vs. Specificity, Cure vs. Chance of Life	Dr. Dietrich Matern
3:00pm	3:30pm	Update on Newborn Screening for ALD	Dr. Joshua Bonkowsky
3:30pm	3:45pm	Update on NBS for MLD	Dr. Michael Gelb
3:45pm	4:00pm	Update on NBS for CTX	Dr. Michael Gelb
Wednesday, July 19th
		Medical Symposium, Day Two	Moderator: Dr. Jennifer Rubin
		Leukodystrophy Care Network
8:00am	9:00am	LCN Phase II - Current gaps and unmet needs in the Leukodystrophy Community	Anna Grantham
9:00am	9:20am	Transitioning into Adulthood: Pitfalls and Opportunities	Catie Becker
9:20am	9:50am	Musculoskeletal CPG	Dr. Sally Evans
9:50am	10:20am	Pulmonary CPG	Dr. Geovanny Perez
10:20am	10:50am	The genetics of cerebrotendinous xanthomatosis and implications for NBS	Dr. Austin Larson
		Updates on Treatments and Clinical Trials for Leukodystrophies
10:50am	11:20am	DUOC: A Cord Blood Therapy to Myelinate the Brain	Dr. Joanne Kurtzberg
11:20am	11:35am	A Clinical Trial of Leriglitazone in Adult Cerebral Adrenoleukodystrophy	Dr. Ali Fatemi
11:35am	12:00pm	Discussion
12:00pm	12:45pm	Lunch
12:45pm	1:15pm	Orchard Therapeutics	Angela Tom
1:15pm	1:45pm	Vigil Therapeutics - CSF1R	Dr. Andreas Meier
1:45pm	2:15pm	Clinical Trials in the Ultra Rare Leukodystrophies	Dr. Amanda Nagy