MDFSA Blog

From Wikipedia, the free encyclopedia Mattie J.T. Stepanek Stepanek in June 2004 Born Matthew Joseph Thaddeus StepanekJuly 17, 1990Washington, D.C.[1] Died June 22, 2004 (aged 13)Washington, D.C. Mother Jeni Stepanek (Mama Peace) […]

Muscular dystrophy is a group of genetic conditions characterized by progressive muscle wasting and loss of muscle function. Different muscle types may be affected by different types of muscular dystrophy. How muscular […]

I want to continue writing stories about rare disease survivors Written by Shalom Lim  In my previous column, I shared my experience of stepping away from performing in my own play, “The […]

Written by Patrick Moeschen After my muscular dystrophy diagnosis in August 1985, I thought I could hide my symptoms from my friends at school. When I started seventh grade a few weeks later, […]

It’s my way of staying balanced when life tries to tip the scales Written by Patrick Moeschen  I’m feeling funny today — humorous, in fact. Brimming with sarcasm and a splash […]

What is oculopharyngeal muscular dystrophy (OPMD)? OPMD is a rare, slowly progressive myopathy that is characterized by weakness of the eyelids (ocular) and throat (pharyngeal) muscles. Additionally, OPMD can be […]

by Victoria Scott Nawaal Akram aspires to be the role model she looked for – but didn’t find – as she was growing up in Qatar. The 17-year-old Pakistani expat was diagnosed […]

Written by Patrick Moeschen | 19 January 2026 “I think true strength is persevering through events that are beyond our control” I’d like to share my thoughts on what the word “strength” means. […]