Tuesday, July 21, 2020
Medical Symposium – Day 1
State Labs Newborn Screening Presentations
Presenters:
NY – Dr. Joseph Orsini
MO – Tracy Klug
KY – Dr. Sainan Wei
OH – Dr. Margie Ream
TN – Dr. George Dizikes
IL – Dr. Khaja Basheeruddin
NJ – Miriam Schachter
PA – Angela Gumby
IN – Barb Lesko
SC – Kimberly Seals
Krabbe NBS Council & Krabbe NBS Guidelines
Presenters: Dr. Joanne Kurtzberg, Dr. Joseph Orsini, Dr. Robert Thompson-Stone, and Dr. Dieter Matern
EIKD NBS Case Study
Presenters: Dr. Kristin Page and Dr. Margie Ream
Krabbe NBS Patient Perspective Survey
Presenters: Natasha Spencer and Christin Webb
ALD NBS Guidelines
Presenters: Dr. Ali Fatemi, Dr. Eric Mallack, and Dr. Molly Regelmann
ALD NBS Parent Guidelines
Presenter: Miranda McAuliffe
MLD NBS Pilot and Next Steps
Presenter: Dr. Michael Gelb
Wednesday, July 22, 2020
Medical Symposium – Day 2
Treatment for ALD, CTX, Krabbe, and MLD
Presenters:
ALD & AMN
Presenters: Dr. Florian Eichler and Dr. Ali Fatemi
DUOC for Leukodystrophies
Presenter: Dr. Joanne Kurtzberg
CTX (Treatment & Guidelines)
Presenters: Dr. Andrea DeBarber and Dr. Brian Wishart
**We are unable to share the MLD and Krabbe Treatment Presentations per the request of those presenters.
LCN Certified Centers
Presenters: Dr. Josh Bonkowsky, Dr. Ali Fatemi, Dr. Joanne Kurtzberg, Catie Becker, Dr. Jennifer Rubin, Dr. Eric Mallack, and Dr. Stephanie Keller
LCN Telemedicine
Presenters: Connor Murray and Kim Hollandsworth
LCN Center Care Coordinators
Presenters: Catie Becker and the LCN Care Coordinators
LCN Clinical Practice Guidelines (CPG)
Presenters:
Diagnosis – Dr. Maura Ruzhnikov
Seizures – Dr. Eric Mallack
Neurology Family Companion – Catie Becker
Respiratory – Dr. Geovanny Perez