LGMD Specialists

LGMD Awareness Day Toolkit

The LGMD Awareness Foundation is on a mission to shine a global spotlight on limb-girdle muscular dystrophy (LGMD) and champion the cause for improved access to diagnosis, care, and treatment for those living with this condition. As we celebrate a decade of progress, we will be rolling out an Awareness Day Toolkit in spring of 2024, designed to empower and engage our community in advocacy like never before.

LGMD Awareness Day Toolkit

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
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
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

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