ALD Connect Patient Learning Academies

We host events (or a dedicate a day during the Annual Meeting) for patients and families. Experts 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 2019

November 9th, 2019 – Waltham, MA
2019 Annual Meeting videos can be viewed here.

PLA Welcome (Kathleen O’Sullivan-Fortin and Greg Benton)

Community Call Update (Kathleen O’Sullivan-Fortin)

LCN Update and Clinical Practice Guidelines (Jacque Waggoner)

Understanding Urinary and Bowel Dysfunction in Adults With ALD (Camille Corre)

Movement Disorder Studies in Women With ALD (Melanie Supnet)

Symptomatic Therapy and Rehabilitation (Brian Wishart)

ALD Connect Ambassador Award Presentation (Kathleen O’Sullivan-Fortin)

Portrait of a Family With ALD

Supporting the ALD Family (Kathryn Weagle)

Update on Stanford Trials (Keith Van Haren)

2020 ALD Family Retreat

Adrenal Insufficiency It’s Not Just My Summer Tan

Clinical Panel

Patient Learning Academy 2018

November 2nd and 3rd, 2018 – Philadelphia, PA
2018 Annual Meeting videos can be viewed here.

ALD Connect Awards

Welcome (Amber Salzman)

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)