2018 Annual Meeting

news | October 2, 2018

ALD Connect 2018 Annual Meeting & Patient Learning Academy

Videos

2018 Patient Learning Academy Videos

2018 Annual Meeting Videos

Program

Day 1: ALD Connect Consortium Annual Meeting

8:00 am Breakfast and Registration
8:30 am Welcome: Updates on ALD and AMN (Florian Eichler, MD)

Standards of Care:
8:45 am Newborn Screening Response and Long-Term Monitoring (Laura Adang, MD, PhD )
9:10 am Leukodystrophy Care Network Clinical Practice Guidelines (Anna Grantham)
9:35 am Center of Excellence Standards of Care Management: A Multidisciplinary Approach (Adeline Vanderver, MD)
10:00 am Spinal Cord Imaging Advances in AMN (Bela Turk, MD)
10:25 am Modeling Cerebral ALD Lesion Growth: Informing Standards of Care (Eric Mallack, MD)
10:50 am Break
11:10 am Expert Consensus Guidelines: A Transatlantic Approach (Marc Engelen, MD, PhD)
11:35 am Progress in Gene Therapy for Cerebral ALD (Christine Duncan, MD)

New Science and Therapeutics:
1:00 pm ALD Connect Awards
1:30 pm New Insights into Biomarkers for ALD (Troy Lund , MD, PhD)
2:00 pm Improving the Outcomes of Cord Blood Transplantation for Children with Inherited Metabolic Diseases (Vinod Prasad, MD, FRCP)
2:30 pm Understanding Dysfunction of the Blood-Brain Barrier in ALD (Patricia Musolino, MD, PhD and Alexander Lenail, BS)
3:00 pm Break
3:15 pm Industry Panel
4:30 pm Adjourn
6:30 pm Reception: Passed Appetizers & Cocktails
7:30 pm Book Club: Smiles and Duct Tape (Jesse Torrey)

Day 2: Patient Learning Academy

8:30 am Breakfast and Registration
9:00 am Welcome and Introduction to ALD Connect (Amber Salzman, PhD)
9:15 am Current Overview of ALD Biology (Florian Eichler, MD)
9:30 am Clinical Trial Updates (Keith Van Haren, MD)
9:55 am Experimental Treatment and Decision-Making (Ben Lenail)
10:20 am Endocrine Management Across a Lifespan (Jeff Roizen, MD, PhD)
10:55 am Break
11:15 am Positive Exposure (Rick Guidotti)
11:40 am Group Photo
12:00 pm Lunch
12:45 pm North Carolina Newborn Screening Pilot Program Results (Jennifer Taylor, PhD)
1:05 pm US ALD Newborn Screening Update (Elisa Seeger)
1:30 pm It Takes an Army to Make Change (Dean Suhr)
1:45 pm Living as a Man with ALD (Chris Kaag)
2:05 pm Living as a Woman with ALD (Taylor Kane)
2:25 pm Breakout Session
3:30 pm Transitioning Care – From Pediatrics to Adult (Catherine Becker, NP)
4:00 pm ALD Life: The UK Experience (Karen Harrison)
4:30 pm Pelvic Floor Physical Therapy and Urogynecology in AMN (Kristene Whitmore, MD)
5:00 pm Adjourn