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Every day, people living with neuromuscular diseases like muscular dystrophy, amyotrophic lateral sclerosis (ALS), and related conditions juggle medications, doctor appointments, and daily challenges with the everyday business of life. We’re introducing you to just a handful of those in our community — multifaceted, driven by passions, and dreaming big. Like anyone, they persevere, especially in the face of uncommon difficulty. This is a celebration of them, what brings light into their lives, and their oft-unseen but vital realities.

Jordan Arnold

5-year-old Jordan was born with spinal muscular atrophy (SMA) type 1, a motor neuron disease that has affected her overall growth and development but hasn’t dulled her sparkle. Thanks to unwavering support from her parents and Spinraza, a disease-modifying drug approved in 2016 to treat SMA, she has made remarkable progress. From developing the ability to sit up and support the weight of her neck to daily accomplishments such as learning to eat on her own or throw a basketball with her big brother, Jack — chattering all the way — she shines as brightly as her future.

Read Jordan's Story

Jordan Reidenberg

At the age of 6, Jordan was diagnosed with Duchenne muscular dystrophy (DMD). What seemed to be a simple problem with walking ended up being a debilitating disease that, for many, might have crushed the spirit. But not for Jordan. Meeting other kids living with DMD, through advocacy efforts and MDA Summer Camp, showed him he could belong — and just be a kid, too. Now an 18-year-old soon-to-be high school senior with an eye on careers that could make the world more accessible for everyone, for now, he spends time with his beloved service dog, Jolly, and is set on conquering every teen’s dream: driving.

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Anthony Maisonave

Anthony Maisonave, 11, who lives with limb-girdle muscular dystrophy (LGMD) type 2C, which causes weakness and atrophy of the proximal muscles in the hips and shoulders, proves that with a wheelchair and a curious spirit, you can really go places. He has navigated the hustle and bustle of New York City, family financial struggles, and physical challenges, supported by an extraordinary multitasking mother. He works with numerous nonprofits, including Magic Wheelchair and MDA Muscle Walk. And when he’s not volunteering, he has his head in space — the cosmos, that is. Anthony has a keen interest in astronomy, physics, and the workings of the universe.

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Richard Razumny

While no life is lit by sunshine all the time, Richard Razumny knows that with the umbrella family provides, one can weather any storm. For 29-year-old software engineer Rich, the goal of living an idyllic family life was set early; he married his beloved Leah not long after college graduation, and their first child followed shortly after. But unexpected symptoms — a limp, dexterity issues, and fatigue — in Rich soon raised concerns. Tests showed he had amyotrophic lateral sclerosis (ALS), a fatal neurodegenerative disease. Rich is determined to make the most of every day he has. The birth of his second child, participation in MDA's Engage and Parenting at a Challenging Time events, and proactive changes to his routine have made an immense impact on his quality of life — and how he and his family cultivate joy.

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Maria Llave

18-year-old Maria Llave has always lived by a simple rule: “This is what I can't do. And this is what I can do. This is me.” When she was a baby, her parents took a leap of faith, abandoning their lives in their native Peru to seek top-notch medical care for Maria’s spinal muscular atrophy (SMA) type 2 diagnosis. Their high-stakes chance paid off: Maria received paramount medical care at Columbia University’s Irving Medical. Enduring seven surgeries for spine growth issues and helping her parents navigate a new country, Maria has never allowed limitations to interfere with what’s possible. Her confidence only grew at MDA Summer Camp, preparing her for high school, where she forged stellar friendships and honed her theater skills to shine in the spotlight.

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Hannah and Austin Stacks

Sometimes it seems as though time is traveling at the speed of light. The Stacks know. Austin and Hannah Stacks are siblings who love Xbox, their dachshunds, and MDA Summer Camp; they were also both diagnosed with Friedreich's ataxia (FA) and are living with a loss of coordination and muscle control, as well as, increasingly, a decrease in stamina. Still, they share a sibling rivalry that keeps family games fun (and heated). Hannah, 17, made the conscious choice to be home-schooled in an accessible environment; Austin, 13, still attending school, is a social butterfly with a passion for video games. The kids’ parents, Candy and Jason, would love to stop the clock, spend more time with their children, and slow the progression of their disease. But with no cure on the horizon, the family's goals have shifted. Each day, the Stacks make mindful choices to maximize enjoyment together. They’ve learned what so many people neglect to remember: Time is fleeting.

Read Hannah and Austin's Story