6th Annual ALD Standards of Care Conference January 13-14, 2022 

Session 1 | Legislative Updates (Miranda McAuliffe, ALD Alliance)

SESSION 2 | Newborn Screening Roundtable Update (Joe Orsini, PhD NYS Department of Health)

SESSION 3 | Mental Health Perspective from a Counseling Rare Disease Dad (Dr. Al, Freedman Counseling Associates)

SESSION 4 | Psychological Impact of ALD Project Update (Rene Pierpont, PhD, LP & Ashley Isaia, PhD University of Minnesota)

Session 5 | The Testicular Cryopreservation Process (Kyle Orwig, PhD Magee-Womens Research Institute)

SESSION 6 | Newborn Screening Dad Experience: A Son Diagnosed (Tom McGuire)

SESSION 7 | Outcome Measures for AMN (Ali Fatemi, MD, CMO, Kennedy Krieger Institute)

SESSION 8 | Newborn Screening State Experience: Georgia (Tricia Hall, PhD, Georgia Department of Public Health)

SESSION 9 | Standard of Care: Endocrinology (Molly Regelmann, MD, Childrens Hospital at Montefiore)

SESSION 10 | Standard of Care: Neurology (Eric Mallack, MD, NY-Presby/Weill Cornell Medicine)

SESSION 11 | Transplant & Gene Therapy Overview (Gerald Raymond, MD, Johns Hopkins Medicine)

SESSION 12 | Newborn Screening Mom Experience: A Daughter Diagnosed (Domonique Casper Shaw, PhD)

SESSION 13 | Remember The Girls: Reproductive Options Tool Kit (Taylor Kane, Founder, Remember The Girls)

SESSION 14 | Newborn Screening State Experience: Utah (Josh Bonkowsky, Md, PhD, University of Utah)

SESSION 15 | Clinical Trial Update: Vitamin D (Dohyup Kim, PhD, Stanford University)

SESSION 16 | Clinical Trial Update: bluebird bio (Stephanie Licata, bluebird bio)

5th Annual ALD Standards of Care Conference January 14-16, 2021 

Session 1 | Program Introduction and Welcome from Welcome Elisa Seeger and Miranda McAuliffe

SESSION 2 | Legislative Updates - Elisa Seeger, Miranda McAuliffe, Emily Fields - bluebird bio

SESSION 3 | GvHD - Graft versus Host Disease Jaap-Jan Boelens, MD, PhD - MSKCC

SESSION 4 | Newborn Screening Parent Experience Sarah Tong - Massachusetts

Session 5 | Neurology and Endocrinology Guidelines - Eric J. Mallack, MD, Molly O. Regelmann, MD

SESSION 6 | ALD RegistryPaul Orchard, MD - University of Minnesota

SESSION 7 | Neurodevelopmental Testing in ALDAram Kim, MD

SESSION 8 | Newborn Screening Parent Experience Amanda Valdez - Minnesota

SESSION 9 | ALD CME Webinar Overview Chris Napolitan, Vice President - PRIME Education

SESSION 10 | Updates in Vitamin D Josh Bonkowsky, MD, PhD, Keith Van Haren, MD

SESSION 11 | Telehealth for ALD : S. Ali Fatemi, Catie Becker, Chris Porter, Amena Smith Fine,

SESSION 12 | Navigating the Psychological Impact of ALD: Family Panel & Discussion