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SMA Doesn’t Define Her

It’s 5:30 in the morning when the alarm goes off. By now, Nicole* has gotten her treatment day routine down to a science. She packs her water and snacks for the day, then gets her daughter ready and off to school. Nicole embodies that #womenpreneur spirit—she’s a wife,…

My Moments of Inner Strength From Childhood to Adulthood

Imagine barely being able to catch a football and then becoming captain of the high school football team. This happened to Robb* who was diagnosed with Type 2 SMA as a young child and grew up in the suburbs of Columbus, Ohio. *This is Robb’s personal story and experience. His…

A new treatment option for the SMA community Sponsored Post

Treatment options for spinal muscular atrophy (SMA) have become available in recent years, as research about SMA itself continues to expand. This summer, the SMA community received exciting news, as the FDA approved a new treatment option called Evrysdi (risdiplam). It’s a prescription medication used to treat SMA in infants,…

The importance of newborn screening for SMA Sponsored Post

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn…

How different generations living with SMA can teach one another

Paying it forward Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends…

Celebrating “Inchstones” in SMA

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A mother’s perspective: How our family measures progress since treatment You couldn’t picture a happier or more beautiful little boy than the one who came into our lives on January 4, 2019. Little did we know, this bundle of joy we named Slade was just starting a journey that was…

Adapting to Life Outside Our Home With SMA

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I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.