About Us

Founder

Magnolia Wang is a student at the University of Pennsylvania with a passion for biology and genetics. As a University Scholar, she has dedicated her time in the past few semesters to researching the integral role of inflammation in musculoskeletal disorders at the Perelman School of Medicine. Magnolia also works to promote scientific literature beyond the Penn community. She serves as Editor-in-Chief of the PennScience Journal of Undergraduate Research, where she mentors students both at Penn and around the world to develop scientific articles and publish research findings in the bi-annual journal. Magnolia founded Stac3.org to raise awareness of the debilitating symptoms and work towards resolving its disproportionate effects on those of Lumbee descent. Through this initiative, she strongly advocates for comprehensive genetic testing and to propel the fight for a cure.

Advisory Board

Dr. Cynthia M. Powell, MD

Professor, Pediatric Genetics and Metabolism, University of North Carolina at Chapel Hill
Dr. Powell is a pediatric geneticist with expertise in newborn genetic screenings and rare diseases. She pioneered in the clinical characterization of NAM and made seminal contribution of elucidating complex symptoms and natural history. She successfully advocated for the inclusion of STAC3 genetic testing in the congenital myopathy multigene panel.

Dr. Kurt Beam, PhD

Professor, Department of Physiology and Physics, University of Colorado Anschutz Medical Campus
Dr. Beam’s scientific expertise lies in E-C coupling in skeletal muscle. His ground-breaking research in characterizing the functional interactions between voltage-gated calcium channels (dihydropyridine receptors, DHPRs) in the transverse tubular (TT) membrane and calcium release channels in the sarcoplasmic reticulum (SR) has laid the foundation of pathogenic mechanisms in NAM.
Dr. Beam is a member of the National Academy of Sciences.

Dr. Stefano Perni, PhD

Assistant Research Professor, Department of Physiology and Physics, University of Colorado Anschutz Medical Campus
Dr. Perni’s research focuses on determining regions of close proximity between proteins as well as potential sites of interaction within the TT/SR junction to investigate the dynamic changes that may occur in those regions during physiological function. His novel research findings in STAC adaptor proteins and regulation of calcium ion channels were published in multiple journals.

Mission

We are dedicated to raising awareness of NAM:

in the scientific community, supporting research to further our understanding of the genetic basis of the disease
in the medical field, to expand genetic screening and counseling to families at risk
in the public to connect, support, and advocate for individuals with STAC3 Disorder and their families

Our ultimate goal is to support gene therapy to alleviate the disproportionate effects on those of Lumbee descent.