LGMD Specialists

LGMD Awareness Day

LGMD (Limb Girdle Muscular Dystrophy) Awareness Day is a day dedicated to raising awareness about Limb Girdle Muscular Dystrophy, which is a group of rare genetic disorders that cause progressive weakness and wasting of the muscles.

LGMD Awareness Day

Spotlights

Explore our ‘Spotlights’ section, where we shine a light on the inspiring stories and invaluable contributions of individuals with LGMD, their dedicated caregivers, supporting organizations, and the clinicians who support them.

One of the challenges of living with a rare disease such as limb-girdle muscular dystrophy (LGMD) is finding physicians and other health care specialists who have a good understanding of the disease process.

GRASP – LGMD Consortium

The Genetic Resolution and Assessments Solving Phenotypes in LGMD (GRASP-LGMD) consortium was created in 2018 and includes sites in the United States and abroad. The overarching mission of the GRASP-LGMD consortium is to hasten therapeutic development in the LGMDs. The consortium includes:

California: University of California in Irvine — Dr. Tahseen Mozaffar MD
Colorado: University of Colorado Health In Aurora – Dr. Stacy Dixon, MD
Florida: University of Florida in Gainesville – Dr. Carla Zingariello, DO
Indiana: The Community Health Clinic in Shipshewana – Dr. Zineb Ammous, MD
Iowa: University of Iowa in Iowa City — Dr. Katherine Mathews, MD
Kansas: Kansas University Medical Center in Kansas City — Dr. Jeffrey Statland, MD (Clinical Research Liaison)
Maryland: Kennedy Krieger Institute in Baltimore — Dr. Doris Leung, MD
Minnesota: University of Minnesota in Minneapolis — Dr. Peter Kang, MD
Missouri: Washington University in St. Louis — Dr. Conrad Weihl, MD, PhD (Biobank)
North Carolina: Atrium Health in Charlotte – Dr. Urvi Desai, MD
Ohio: Nationwide Children’s Hospital in Columbus — Linda Lowes, PT, PhD
Virginia: Virginia Commonwealth University in Richmond — Dr. Nicholas Johnson, MD (Coordinating Center)

Members Outside of the United States

Denmark: Copenhagen University in Copenhagen – Dr. John Vissing, MD
Italy: NEuroMuscular Omnicentre (NEMO) in Milano – Dr. Valeria Sansone, MD
Netherlands: Leiden University in Leiden – Dr. Erik Niks, MD
New Zealand: University of Auckland in Grafton, Auckland – Dr. Richard Roxburgh
United Kingdom: Newcastle University in Newcastle upon Tyne — Dr. Jordi Diaz-Manera, MD