The Global Alliance for Myotonic Dystrophy Awareness proudly joins the global rare disease community in commemorating Rare Disease Day on February 28th, 2025. With over 60 organizations collaborating worldwide, the Alliance continues to advance understanding, care, and research for myotonic dystrophy (DM), one of the most prevalent rare genetic disorders.

MDF is excited to introduce “Understanding Myotonic Dystrophy”, a new series of short educational animations designed to educate people living with myotonic dystrophy (DM) and their healthcare providers! Our second animation “Understanding Myotonic Dystrophy – Inheritance of Myotonic Dystrophy Type 1 (DM1)”, explains how DM1 is passed down from generation to generation and highlights the importance of genetic testing.

Hot off the presses - a large study examining healthcare costs and utilization for patients with myotonic dystrophy highlighted high clinical and economic burden, as well as stresses the importance of improving care and lowering the healthcare costs. Specifically the study showed that DM patients:

Drawn to RNA biology, Dr. Bae joined Dr. Auinash Kalsotra’s lab at the University of Illinois for postdoctoral training. Currently, Dr. Bae is working on the project “Investigating the molecular mechanisms of liver dysfunctions in myotonic dystrophy” and optimizing protein quantification assays and exploring DM1 pathologies in the liver, a largely overlooked organ in DM1 research.