Annual Meetings
ALD Connect Annual
Meeting 2020
2020 ALD Connect Annual Meeting and Patient Learning Academy - Final Program
Introduction to the 2020 ALD Connect Annual Meeting and Patient Learning Academy
Kathleen O'Sullivan-Fortin
ALD Connect in 2020 - A Year Like No Other
Dr. Florian Eichler
Results of a Pilot Study of Vitamin D in ALD Boys
Dr. Keith Van Haren
New Insights into Cerebral ALD
Dr. Joshua Bonkowsky
ALD Newborn Screening Pilot Project
Dr. Eric Mallack
Metabolic Rerouting of Very-Long-Chain Fatty Acid Synthesis Impacts ALD
Dr. Stephan Kemp
Patient Panel
Industry Panel
Young Investigator Panel
Multi-Omic Approach to Identify Phenotypic Modifiers Underlying Cerebral Demyelination in X-Linked ALD
Phillip Richmond
Therapeutic Efficacy of PXL770 for ALD
Dr. Jaspreet Singh
Gene Correction in HSCs Restores White Matter Microvascular Function in cALD
Dr. Patricia Musolino
Newborn Screening
Miranda McAuliffe
ALD Connect Awards
Welcome
Kathleen O'Sullivan-Fortin
ALD Family Weekend: Building Community
Nic Adler
More than a Diagnosis: Living with ALD and the Mental Health Impact
Johanna Bond, LMHC
Endocrine Considerations in Adrenoleukodystrophy
Dr. Molly Regelmann
Genetic Counseling
Functional Considerations in Symptomatic Myelopathy Associated with ALD
Dr. Brian Wishart
Women with ALD: Restless Legs Syndrome and Movement Disorders
Education Supports for ALD Boys: IEPs AND 504 Plans
Nicole Metsistso Mazer, Esq.
Post-Transplant
Planning for the Future: Financial Planning
John Nadworny, CFP®, CTFA
Grassroots Fundraising
Ask the Experts
Social Hour: 2 Truths and a Lie
Jon Kuderer
ALD Connect Annual Meeting 2019
November 8-9, 2019 – Waltham, MA
Welcome: Myelin Project and ALD Updates (Florian Eichler)
Big Data & Little Fish (Josh Bonkowsky)
SCAN: Screening for ALD in the Netherlands (Stephan Kemp)
ALD Newborn Screening – Progress and Challenges (Elisa Seeger)
Newborn Bloodspot Screening: A Global Perspective (Bob Wyborn)
GLIA-CTN Global Leukodystrophy Initiative – Clinical Trials Network (Adeline Vanderver)
Ask an Expert: Patient Panel (Ben Lenail)
ALD Connect Awards
Engraftment Disease Remission & Clinical Trial Update (Troy Lund)
Early Lesion Growth Analysis in Cerebral ALD (Erik Mallack)
Pilot Scale Study of Human Plasma Identifies Potential Biomarkers to Predict X ALD (Jaspreet Singh)
Generation of ALD Brain Organoids as a Preclinical Model (Vivi Heine)
Update on Dendrimer Therapy Organoids as a Preclinical Model (Ali Fatemi)
Biomarker Discovery for Disease Onset or Therapeutic Intervention Studies (Yorrick Jaspers)
Industry Panel (Amber Salzman)
ALD Connect Annual Meeting 2018
November 2nd and 3rd, 2018 – Philadelphia, PA
Welcome: Updates on ALD and AMN (Florian Eichler)
Centers of Excellence Standards & Care Management (Adeline Vanverver)
LCN Clinical Practice Guidelines (Anna Grantham)
Newborn Screening Response and Long-Term Monitoring (Laura Adang)
Imaging Advances in AMN: Spinal Cord (Bela Turk)
Modeling Cerebral ALD Lesion Growth (Eric Mallack)
Expert Consensus Guidelines – A Transatlantic Approach (Marc Engelen)
Progress in Gene Therapy for ALD (Christine Duncan)
Risk & Rewards Stabilizing ALD With Transplant (Troy Lund)
Cord Blood Transplantation for Children (Vinod Prasad)
Understanding Dysfunction of the Blood-Brain Barrier in ALD (Patricia Musolino, Alexander Lenail)
Industry Panel (Cleland/Opheris, DeWitt/Deuterx-Poxel, Fortin/bluebird bio, Meya/Minoryx, Cromwell/Sanofi Genzyme)
ALD Connect Annual Meeting 2017
November 17th and 18th, 2017 – Bethesda, MD
Welcome: Introductions and Goals for 2017 Annual Meeting (Ali Fatemi)
The Therapeutic Landscape of ALD and AMN (Florian Eichler)
Clinical Trial Readiness for Rare Neurological Diseases: FDA and NIH Perspective (Devanand Jillapalli (FDA) and Jill Morris (NIH)
The ALD Database and the Need for Translational Metabolism in Newborn Screening (Stephan Kemp)
Newborn Screening for ALD (Ann Moser and Elisa Seeger)
2017 ALD Connect Awards (Kailey Walsh)
Industry Panel: Updates on Trial Plans
Outreach and Advocacy for ALD (Jean Kelly)
Learning from Others: Patient Engagement Across Rare Disease (Ronald Bartek and Margie Frazier)
Group Brainstorm and Wish List for 2018 (Ben Lenail)
