Patient Learning Academy 2020
November 9th, 2019 – Waltham, MA
PLA 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 (Deirdre Sumski, GC and Janis Sherwood)
Functional Considerations in Symptomatic Myelopathy Associated with ALD (Dr. Brian Wishart)
Women with ALD: Restless Legs Syndrome and Movement Disorders (Dr. John Winkelman and Dr. Nutan Sharma)
Education Supports for ALD Boys: IEPs AND 504 Plans (Nicole Metsistso Mazer, Esq.)
Post-Transplant (Dr. Troy Lund, Julie Purschke and Jillian Smith)
Planning for the Future - Financial Planning (John Nadworny, CFP®, CTFA, Affinia Financial Group and Jesse Torrey)
Grassroots Fundraising (Chris and Katie Marino, Jamie McAnelly, Cassie Groh)
Ask the Experts
Dr. Joshua Bonkowsky, University of Utah
Dr. Florian Eichler, Massachusetts General Hospital
Dr. Troy Lund, University of Minnesota
Dr. Molly Regelmann, Children's Hospital at Montefiore/Albert Einstein College of Medicine
Dr. Keith Van Haren, Stanford University
Patient Learning Academy 2019
November 9th, 2019 – Waltham, MA
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
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 ALD (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