Topic/Event	Speaker	Presentation Recording
Monday, July 15th	Arrive/Check In
Tuesday, July 16th	Medical Symposium, Day One
7:00am	Breakfast
	Preparing for Nationwide NBS for Krabbe Disease and other Leukodystrophies	Moderator: Dr. Robert Thompson Stone
8:00am EST	Welcome
8:20am	Getting Krabbe Disease on the RUSP and its possible consequences	Dr. Dietrich Matern	View Presentation
8:50am	Panel Discussion: State NBS Programs	Moderated by Dr. Dietrich Matern	View Presentation
		Panelists:
		Dr. Joseph Orsini, NY
		Tracy Klug, MO
		Darrin Sevier, KY
		Sharon Linard, OH
		Gwendolyn McKee, TN
		Dr. Barbara Burton, IL
		Barb Lesko, IN
		Dr. Taraka Donti, PA
		Angela Wittenauer, GA
		Elizabeth Bair, SC
10:00am	BREAK
10:15am	Krabbe Disease Newborn Screening Council	Dr. Joe Orsini	View Presentation
10:30am	Panel Discussion: Communicating with a family who has screened positive for Krabbe Disease	Dr. Barbara Burton, Dr. Joanne Kurtzberg, Dr. Robert Thompson Stone	View Presentation
11:30am	Krabbe Disease Transplant Protocols and Outcomes	Dr. Joanne Kurtzberg	View Presentation
12:30pm	Lunch
1:30pm	Panel Discussion: Preparing for an IKD Referral	Christin Webb, Dr. Joanne Kurtzberg, Dr. Paul Orchard, Dr. Hemalatha Rangarajan, Dr. Jennifer Rubin, Dr. Shalini Shenoy	View Presentation
2:15pm	LOKD Database	Dr. Camille Corre
2:30pm	Phenotype-Genotype Correlations in Krabbe Disease	Dr. Michael Gelb	View Presentation
2:45pm	BREAK
3:00pm	ALD NBS Overview and Update	Dr. Ali Fatemi	View Presentation
3:30pm	MLD NBS Overview and Update	Dr. Michael Gelb and Dr. Barbara Burton	View Presentation
4:00pm	CTX NBS Overview and Update	Dr. Andrea DeBarber and Dr. Michael Gelb
4:35pm	GROUP PHOTO
	Meeting Ends
6:00pm	Dinner
Wednesday, July 17th	Medical Symposium, Day Two
7:00am	Breakfast
	Leukodystrophy Care Network	Moderator: Dr. Robert Thompson Stone
8:00am EST	Opening Remarks
	Industry updates
8:10am	Orchard Therapeutics	Jen Pyron	View Presentation
8:40am	Mirum Pharmaceuticals	Dr. Rana Dutta	View Presentation
9:00am	Vigil Neuroscience	Dr. Ali Toumadj	View Presentation
9:20am	Forge Biologics	Dr. Maria Escolar
9:50am	Clinical translation of a Krabbe Disease gene therapy without HSC transplant	Dr. Steven Gray
10:20am	BREAK
10:40am	Overview of Vanishing White Matter	Dr. Joshua Bonkowsky	View Presentation
11:40am	Transition of Care	Catie Becker	View Presentation
12:00pm	Lunch
1:00pm	Panel Discussion: Consensus on long term follow-up for Leukodystrophy NBS patients	Dr. Ali Fatemi, Dr. Joanne Kurtzberg, Dr. James Provenzale, Dr. Margie Ream, Dr. Robert Thompson Stone, Amy White	View Presentation
2:00pm	Leukodystrophy Focused Payer Education	Sarah Waite-Ardini
2:30pm	Next steps for LCN Clinical Practice Guidelines	Dr. Margie Ream
4:00pm	Meeting Closes
6:00pm	Family Welcome Dinner		Sunrise, 1st Floor HV Lodge
	Click here to view Thursday's agenda