Halsey is a young woman living with SMA Type I. She received this diagnosis at the age of 15 months after her parents sought multiple doctors’ opinions and genetic testing — a process that has since been made much easier with today’s technology and understanding of the disease. Halsey is an avid reader and enjoys art and crock pot cooking. She also enjoys serving as a volunteer for a disability center in her home state of Indiana. She is now pursuing her writing dream with the hope of offering glimpses into everyday life with SMA and challenging readers to look for the positive in every situation.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…
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…
