Society often defines successful people as those who have achieved several traditional milestones. Those milestones tend to include obtaining a college degree, becoming financially independent, buying a home, getting married, and raising children. If you’ve achieved anything on that list, congratulations! Please know that these are all praiseworthy accomplishments. My…
From Where I Sit — Halsey Blocher
Halsey Blocher is a young woman who was diagnosed with SMA Type 1 in 1999 after a blood test revealed a deletion of the survival motor neuron gene. She now lives with her loving family in Fort Wayne, IN and spends her free time reading, cooking, creating, and enjoying life’s blessings. Halsey is passionate about her work as a Column Lead at Bionews Inc. as well as volunteering with various local organizations. Writing is her lifelong dream, so she uses this gift to advocate and offer glimpses into everyday life with SMA in the hope that it will inspire readers to seek the positive in every situation
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I promise I’m not being negative or dramatic when I say I can’t do anything on my own, and I don’t lack confidence in myself, either. It’s just a fact that with my severe disability, I need help with literally everything. That isn’t a bad thing. It’s a truth that…
For many years, the annual Cure SMA Conference has been bringing the SMA community together to learn and to connect. Throughout its history, the conference has traveled to a variety of locations across the U.S., hosted countless seminars and socials, navigated new virtual platforms, and provided…
“The Truman Show” is one of those movies that I can watch over and over again without ever growing tired of it. I long ago lost count of how many times I’ve seen it, and it’s always been a family favorite. (My mom, who introduced me to…
Every sibling relationship is unique, but what happens when SMA gets thrown into the equation? I could tell you about its effect on my relationship with my brother, Lucas, from my own perspective, but today I want you to hear from someone else. In honor…
As COVID-19 vaccinations continue here in the U.S., I’m noticing that more people are venturing back out into the world and returning to a “new normal.” While I’m glad to see that we’re taking some steps in the right direction, I’m not in a hurry to get back to my…
April has been a special month for me. It probably always will be because April is when I get to celebrate the anniversary of starting my dream job here at Bionews, the company that publishes this website. Last year, I dedicated a column to a few…
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. Then the screen changes to show the same person lying in…
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 in the SMA community, I made the choice to limit most of my excursions to…
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 I love most about the day is…
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 this purpose is wonderful, but let’s not limit these discussions 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. It’s even crazier when I reflect on the prognosis from my…
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, we saw a devastating pandemic, raging wildfires, and a…
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