Active Facioscapulohumeral Muscular Dystrophy (FSHD) Studies

We are seeking 220 volunteers to participate in this research study.

• You will answer 7 health-related questionnaires and undergo physical assessments that test strength and motor function.
• A physical exam will be completed along with genetic testing and a DEXA scan.
• There are a total of 5 visits over 18 months.

There is no cost to participate in this study.

Funds are available to aid with travel expenses.

For more information, please contact:

Kiley Higgs-University of Kansas Medical Center
Study Project Manager
Phone: 913.945.9922
Ksims2@kumc.edu

Katie Roath- University of Kansas Medical Center
Phone: 913.945.9928
kroath@kumc.edu

Leann Lewis- University of Rochester Medical Center
Phone: 585.275.7680
Leann_lewis@urmc.rochester.edu

Mary Yep- Kennedy Krieger Institute
Phone: 443.923.7318
Yep@kennedykrieger.org

Dianne DeGuzman- University of California Los Angeles
Phone: 310.825.3264
ddeguzman@mednet.ucla.edu

Tabitha Alexander- The Ohio State University
Phone: 614.293.6953
Tabitha.alexander@osumc.edu

Laura Sissons-Ross- University of Washington
Phone: 206.543.0081
lsissons@uw.edu

Sarah Moldt- University of Utah
Phone: 801.585.9399
Sarah.moldt@hsc.utah.edu

Liz Diaz-Virginia Commonwealth University
Phone: 804.628.6480
Liz.diaz@vcuhealth.org

Principle Investigators:

• Jeffrey Statland, MD- University of Kansas Medical Center
• Rabi Tawil, MD- University of Rochester Medical Center
• Leo Wang, MD- University of Washington
• Kathryn Wagner, MD- Kennedy Krieger Institute
• Perry Shieh, MD- University of California Los Angeles
• Samantha LoRusso, MD- The Ohio State University
• Russell Butterfield, MD- University of Utah
• Nicholas Johnson, MD- Virginia Commonwealth University