ALD Connect

ALD Connect Annual Meeting & Patient Learning Academy 2023

View video recordings from the 2023 ALD Connect Annual Meeting & Patient Learning Academy, which took place November 3-4, 2023 in Houston, Texas.

ALD Connect Annual General Meeting 2023

Welcome & Overview
Kathleen O’Sullivan-Fortin
Bearing Witness: New Technologies and Old Trauma
Dr. Florian Eichler, MD
Brain Engraftment, Biomarkers, and Transplant
Dr. Troy Lund, PhD, MD
Burden of Illness: Overview for Men with AMN
Eileen Sawyer, PhD
Multiple Cases of Mosaic X-Linked ALD Identified through Newborn Screening
Dr. Alexandra Keefe, MD, PhD
Patient Experience Panel
Moderated by Greg Benton
2022 ALD Connect Emerging Investigators
Chenxu Li / Hemmo Yska, MD / April Rickle
bluebird bio – Gene Therapy Update
Dr. Vinod Prasad, MD, PhD
Update on Continued Efficacy and Occurrence of Myelodysplastic Syndrome in the Gene Therapy Trial
Dr. Christine Duncan, MD
Minoryx Therapeutics Leriglitazone Update
Dr. Arun Mistry, MD
Propel: A Phase 1/2 Study to Evaluate the Safety and Efficacy of IT AAV9-ABCD1 GT in Adults with AMN
Dr. Lawrence Hayward, MD, PhD
SwanBio Investigating AAV Gene Therapy for AMN
Dr. Chris Passalacqua, MD
Interim Results from Nexus Study of Leriglitazone in the Treatment of Cerebral ALD
Dr. Patricia Musolino, MD, PhD
Int'l Validation of Meaningfulness of Postural Sway and Gait to Assess Myeloneuropathy in ALD
Amena Smith Fine, MD, PhD / Bela Turk, MD / Hemmo Yska, MD
ALD Connect Awards & 10th Anniversary Celebration
Interim Results from Nexus Study of Leriglitazone in the Treatment of Cerebral ALD
Dr. Patricia Musolino, MD, PhD
Int'l Validation of Meaningfulness of Postural Sway and Gait to Assess Myeloneuropathy in ALD
Amena Smith Fine, MD, PhD / Bela Turk, MD / Hemmo Yska, MD
ALD Connect Awards & 10th Anniversary Celebration

ALD Connect Patient Learning Academy 2023

Welcome & Overview of ALD Connect
Kathleen O’Sullivan-Fortin
International Partner Updates
Bob Wyborn, Leukodystrophy Resource Research Organization (LRRO) / Verónica de Pablo, Fundación Lautaro te Necesita / Karen Harrison, Alex TLC
The Grey Zone: My Genetic Test Comes Back 'Variant of Uncertain Significance' – Now What?
Stephan Kemp, PhD
ALD Below the Belt
Cristina Sadowsky, MD / Jennifer Keller, PT, MS
Clinical Trials for Women with ALD
Yedda Li, MD, PhD
Development & Validation of the Adrenoleukodystrophy Health Index ALD HI
Jennifer Weinstein, MS
IV Administration of Mesenchymal Stem Cells for the Treatment of Cerebral Adrenoleukodystrophy
Troy Lund, PhD, MD
Exercise and Neurodegenerative Disease
Jennifer Keller, PT, MS
2024 ALD Family Weekend
ALD Associated Trauma
Bruce McClary, LCSW-C, CCM / Jesse Torrey, LAC / Amber Salzman, PhD
Transitions in ALD
Bill and Kate Groel / Julie Purschke / Tim Maguire
Moderator: Kathleen O’Sullivan-Fortin

Useful Links

Annual Meeting and Patient Learning Academy
Annual Meeting and Patient Learning Academy
ALD Connect Annual Meeting & Patient Learning Academy 2021
ALD Connect Annual Meeting & Patient Learning Academy 2021
ALD Connect Annual Meeting & Patient Learning Academy 2022
ALD Connect Annual Meeting & Patient Learning Academy 2022