Rare and Neglected Diseases Symposium 2022: Neurometabolic disorder, NKH.


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April 11th, 2:00-5:00pm

2.00-2.05 pm. Chair and Moderator.    Dr. Rebecca Wingert, Elizabeth and Michael Gallagher Associate Professor.

2.05-2.45 pm. Patient Leadership Panel I.   Patrick and Michelle Sarb (ND-NKH); Kristin Archibald (NKH Crusaders); Chancee Culp (Lucas John Foundation); Heidi Leslie (Brodyn’s Friends); Joe Urban.           

2.45-3.10 pm Research Update I. Dr. Rebecca Wingert & Nicole Weaver

Developmental Effects of Elevated Glycine on NKH

Break.  3.10-3.25 pm

3.25-4.00 pm. Research Update II.  Alejandro Lopez Ramirez, Caroline Bickerton,

Adviti Bali.  NKH Mouse models, genetic and metabolic therapies.

4.00-4.40 pm Patient Leadership Panel II.  Amanda Almany (Nora Jane Foundation); Tom Swoboda (John Thomas Foundation); Mary Fitzpatrick (Fighting for Fiona and Friends); Morgan Schmitz; Ed Thigpen; Cynthia Graham. 

4.40-5.00 pm. Research Update III. Dr. Johan Van Hove. Professor Pediatrics, Clinical Genetics and Metabolism, University of Colorado.