Category: Faces of NM: Community Spotlights

Harneet Sandhu balances a full life. She’s a university student studying criminology, an avid fan of arts and crafts, and the proud parent to an adorable puppy named Mia. She’s also someone who requires around-the-clock care, navigating a world that often struggles to see past her power wheelchair and ventilator. As a featured fundraiser for…

Featured Fundraiser Lily, age 8, lives in Connecticut, and spends her time hanging out with her school friends, playing with her dolls, doing arts and crafts at home, and participating in Girl Scouts. She loves her family, visiting her grandparents, swimming, and her two cats, Muffin and Jag. Lily also lives with NEB-related Nemaline Myopathy,…

“Hey Friends!” If you’ve spent any time watching Jackson’s videos online, you’re probably already familiar with his signature greeting. He announces it to the camera with an effortless confidence and a vocabulary that makes it easy to forget he’s only two and a half years old. Jackson is the kind of kid who commands a…

For 18-year-old Ellary, life is currently a study in dualities. The Rhode Island resident is balancing her final year of high school with her first year of college, navigating a curriculum focused on digital media production. Her goal is clear and professional: to transition into a four-year marketing program and eventually “create marketing campaigns with…

In West Hartford, Connecticut, 11-year-old Lucas can often be found at his DJ controller, blending beats as a dedicated emcee and Daft Punk fan. When he isn’t practicing his sets, he’s usually with his cat, Aleister (aka “Sweetie”), hanging out with his cousins, or playing Roblox. His mom, Monica, says he’s “fiercely independent,” a trait…

At nine months old, Ella is defined by two distinct realities. To her parents, Erin and Paul, she is a sharp, observant infant with bright blue eyes and a smile that anchors their world. She mimics adult behaviors and is already beginning to learn early sign language with her mother. To the medical world, however,…

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…