Blog

Meet Liv, a thoughtful and determined 13-year-old navigating the complexities of her teenage years and Nemaline Myopathy (NM) in Los Angeles, California. For those not familiar with Nemaline Myopathy, it’s a rare neuromuscular disease that weakens the muscles throughout the body, including those involved in movement, speech, swallowing, and breathing. The way NM manifests and…

Meet Priscilla, a bright and inquisitive 9-year-old from Mason, Ohio, living with Nemaline Myopathy (NM). NM is a rare genetic condition affecting the muscles, leading to significant weakness throughout the body. Priscilla carries the NEB gene variant and is considered to be severely affected by the disease, impacting her mobility, breathing, speech, and swallowing. A…

Meet Anthony, a 32-year-old graphic designer from the vibrant city of Haarlem, The Netherlands, who approaches life with a practical mindset and a genuine enthusiasm for connection and exploration. Understanding Nemaline Myopathy: Anthony’s Perspective For those unfamiliar with Nemaline Myopathy (NM), it’s a rare congenital neuromuscular disease, rooted in genetic mutations on one of 12…

Meet Audrey, a vibrant 6-year-old girl from Texas who approaches life with a joyful spirit, even while navigating the challenges of living with Nemaline Myopathy (NM). For those unfamiliar, NM is a rare neuromuscular disease linked to mutations in at least 12 different genes (with NEB and ACTA1 being the most common). It affects the…

Meet Tessa, a bright and resilient 3-year-old from Malta living with Nemaline Myopathy. Located in the Mediterranean, Malta is a small island country spanning just 122 square miles (316 km²) with a population of just over half a million. What makes Tessa’s story even more unique is that she is the only person in Malta…