People with SMA often have very little privacy. Because we lack the strength to independently complete most activities of daily living, we rely on others to accomplish those tasks with or for us. Even intimate activities that…
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My family and I are gathered around the television when one of our favorite shows is interrupted by a commercial. An image is shown of a young person smiling at the camera. They appear to be happy and healthy.
My wheelchair van pulled up outside of a vaccination clinic downtown where I would receive my first dose of Moderna’s COVID-19 vaccine. This was one of my biggest outings in over a year. Like many…
Like any proud Irish girl, I love St. Patrick’s Day. (According to Ancestry, I’m exactly 12% Irish.) I always wear customary green to mark the occasion, and I enjoy partaking in festive events. But what…
As Rare Disease Day approaches on Feb. 28, many in the disability community are seizing the opportunity to share about their diseases and the many aspects of being rare. Having an entire day dedicated to…
It’s been 10 years since my last hospitalization. I’ve waited a long time to be able to say that, because I’ve never been able to say it before. This is a feat of epic proportions for someone with SMA.
Nearly a month into 2021, I think it’s safe to say we’re all glad to have left 2020 behind us. It certainly wasn’t an easy year. Its hardships likely will go down in the history books. Around the globe,…
Last summer, I met a new friend, Amber Bosselman, at the Virtual Cure SMA Conference. Amber is a certified life coach with a bachelor’s degree…
In recent years, Disney has started a new trend of turning its classic animated movies into live-action remakes. In 2019, it released a reimagined “Aladdin.” Much of the story stays true to the original film from 1992, and any…
Thanksgiving is almost upon us. Meals are being planned, and turkeys are being purchased. The delicious smells and flavors of pumpkin and cinnamon will be consumed in many homes. And, my favorite part, thankfulness abounds: Family, good health, the…
I’ve been told many times by many people that I should be a counselor. It’s not unusual for my friends, family members, and co-workers to turn to me for wise advice, calm reassurances, or simply a listening ear. I…
Children typically grow up with many opportunities to participate in a variety of activities. After exploring options, they choose the ones they enjoy most. They might choose sports, or they could opt to participate in art, music, or video…
What was the last spontaneous thing you did? Maybe you suddenly decided to treat yourself to ice cream, bought those shoes that have been calling your name, or went for a drive on a nice day simply because you…
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