FSHD Research Update Meeting

Disco Ball with glow and fringe


Join us at the Bellevue Hyatt just prior to our Annual Auction for an update on current FSHD research.

1:30 - 4:00 pm Seattle Time in the Maple Room, leaving time for those attending the auction to change, check in, get some champagne and munchies.

Join Zoom Meeting
Meeting ID: 826 7617 1328
Passcode: 810960


Title & Time

Premi Haynes, PhD


Scientific Advisor & Board Member for Friends of FSH Research

1:30 pm-1:35 pm

Jeff Chamberlain, PhD

Update on gene therapy

Chair of Scientific Advisory Board, Friends of FSH Research; President, American Society for Gene and Cell Therapy; Professor and McCaw Chair in Muscular Dystrophy ;Director, Sen. Paul D. Wellstone Muscular Dystrophy Specialized Research Center; Depts. Of Neurology, Medicine and Biochemistry, University of Washington School of Medicine, Seattle, WA

1:30 pm-1:35 pm

Stephen Tapscott, MD, PhD

Seattle Wellstone FSHD Clinical Study Molecular Markers of FSHD

Professor, Human Biology Division, Clinical Research Division; Fred Hutchinson Cancer Research Center; Dept of Neurology, University of Washington Seattle, WA

1:50 pm-2:05 pm

Seth Friedman, PhD

MRI data lake updates: to individual muscles and beyond

Manager of Innovation Imaging and Simulation Modeling, Seattle Children’s Hospital, Seattle, WA

2:05 pm-2:20 pm

Tessa Arends, PhD

Consequence of DUX4 expression in FSHD

Postdoctoral Research Fellow in the lab of Dr. Stephen Tapscott, Fred Hutchinson Cancer Center, Seattle, WA



2:35 pm-2:45 pm

Jeffrey Statland, MD


Professor of Neurology; University of Kansas Medical Center, Kansas City, KS

2:45 pm-3:00 pm

Anthony D. Saleh, PhD


CEO, MiRecule, Inc.


Weston Miller, MD

EPI-321: A Potential Treatment for FSHD

CMO, Epic Bio


Christina Tysoe, PhD

Avidity Update: AOC 1020 and the FORTITUDE Study

Clinical Scientist, Avidity Biosciences


Ali Ozes, PhD

Targeting DUX4 with a first-in-class small molecule inhibitor

Founder, CEO & Board Member, Altay Therapeutics