-
10:00AM--Welcome
Kathryn Bryant-Knudson, Founder of The Speak Foundation and Patient living with
LGMD2i/R9
-
10:05AM--FDA Speaker
Wilson Bryan, MD, OTAT, CBER
-
10:15AM--LGMD Clinical Overview
Katherine Mathews, MD, University of Iowa
-
10:30AM--Introduction & Meeting Overview
James Valentine, JD, MHS - Co-moderator
Jennifer Levy, PhD, Coalition to Cure Calpain 3 - Co-moderator
-
10:35AM--Demographic polling
Includes all 6 LGMD subtypes
-
10:40AM--Session 1: Living with Sarcoglycanopathies (LGMD2C, 2D, 2E, 2F) – symptoms, health effects, and impacts on daily life
● Includes Patient Panelists and Discussion Starters
● Patient/caregiver audience remote polling
● Moderated audience discussion (telephone and written comments)
-
11:40AM--Session 2: Living with LGMD2A and LGMD2I – symptoms, health effects, and impacts on daily life
● Includes Patient Panelists and Discussion Starters
● Patient/caregiver audience remote polling
● Moderated audience discussion (telephone and written comments)
-
12:40PM--Lunch
-
1:20PM--Session 3: Current and Future Treatments (all 6 subtypes)
● Includes Patient Panelists and Discussion Starters
● Patient/caregiver audience remote polling
● Moderated audience discussion (telephone and written comments)
-
2:45PM--Summary Remarks
Larry Bauer, RN, MA
-
2:50PM--Closing Remarks & Next Steps
Charlotte Drew, MD - Co-Founder of The Kurt+Peter Foundation and Caregiver
of two sons living with LGMD2C/R5
-
3:00PM--Adjourn