Patient Learning Academies

We also host special separate events (or a dedicated day during the Annual Meeting) geared towards patients and families. Experts known in the field present the science of ALD and the current knowledge of the disease in an understandable manner for many of us who do not have a medical background. Always a relaxed environment, our speakers encourage questions during their presentations and are usually available to talk through the event. But more importantly, these live events allow patients and families to meet others who are in similar situations, share experiences, and receive needed support.

Patient Learning Academy 2018

November 2nd and 3rd, 2018 – Philadelphia, PA

Welcome (Amber Salzman)

Overview & Discussion of ALD Biology (Florian Eichler)

Experimental Treatment & Decision-Making (Ben Lenail)

Endocrine Management Across a Lifetime (Jeff Roizen)

Positive Exposure (Rick Guidotti)

Clinical Trial Updates (Keith Van Haren)

North Carolina Newborn Screening Pilot Program Results (Jennifer Taylor)

US ALD Newborn Screening Update (Elisa Seeger)

It Takes An Army to Make Change (Dean Suhr)

Living as a Man With MLD (Chris Kaag)

Women With ALD: Not Just Carriers (Taylor Kane)

Mental Health Impact: Depression & Suicide (Emma Hayes)

Transitioning Care – From Pediatrics to Adult (Catherine Beeker)

ALD Life: The UK Experience (Karen Harrison)

Urogynecologic Considerations in ALD (Kristine Whitmore)

Patient Learning Academy 2017

November 17th and 18th, 2017 – Bethesda, MD

Progress, Clinical Trials, and Industry Recap (Florian Eichler)

Cellular Therapy for Cerebral ALD (Christine Duncan)

ALD & AMN Patient Experiences (Ben Lenail)

Physical Therapy and the Benefits of Exercise (Jennifer Keller and Christopher Joseph)

Advancing Quality of Life for Advanced Cerebral AMN (Bob Wyborn)

Taking Care of a Newborn With ALD (Tara Meady)

Data Sharing: The Patient’s Voice Makes A Difference (Alex Sherman)

Fighting the Odds, Transformative Patient Experiences (Kyle Bryant)

Young ALD Carriers (Taylor Kane)

Endocrine Issues and Their Management in ALD/AMN (Aniket Sidhaye)

Closing Remarks (Kathleen O’Sullivan-Fortin)