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.Because of the current state of the world, I felt safe in assuming I wouldn’t be attending any concerts this summer. I love concerts, but large, tightly packed crowds aren’t safe right now. However, I forgot to account for how creative people can be. On Independence Day, my family loaded…
For many years, Cure SMA, formerly known as Families of SMA, has organized an annual conference that brings together members of the SMA community from around the globe to learn and connect with each other. Given the current situation, most people were not surprised to…
The long-awaited days of summer have nearly arrived, and I am doing my best to take full advantage of the warmer weather. After so many months of sweaters that make it harder for me to move and sporadic snow flurries late into the year, it’s refreshing to throw open the…
We recently welcomed a new addition to our family. Our adorable puppy, Thor, is a mix of Australian shepherd (75%) and blue heeler (25%). Another name for this mix is Pure Cuteness. Thor seems to be adjusting well to his new home.
I often write about my personal perspective of life, but today I want to introduce an incredible person to whom I have the privilege of being a big sister. Among the many students finishing up their final year of studies is my no longer little brother,…
Like me, you’ve probably had far fewer face-to-face interactions since the start of the COVID-19 pandemic. It’s no longer safe to have company over, and we can’t meet friends or family members for lunch. I’ve been unable to gather with my friends at Turnstone for over a month. These types…
This week is my first work anniversary here at SMA News Today. It’s crazy to think that I’ve had this spectacular job for an entire year. There are so many things that I could tell you about this past year, but instead, I’d like to take…
Reports about COVID-19 have been all over the news and social media. People around the globe are being urged or required to practice social distancing, proper hand washing, and sheltering at home to prevent spreading the highly contagious virus. You might be experiencing social distancing or self-quarantine for the first…
For many years, I’ve been involved in a fantastic local organization called Turnstone that serves the disabled community with a variety of services. I’ve been blessed to benefit from Turnstone’s services since I was 3, both as a client in therapy and in other programs. In recent years, I have…
People look at me questioningly upon realizing that I live with my parents at the age of 22. Moving out is often considered a rite of passage. People expect me to do the same, even though many young adults enjoy living at home with their families. I don’t know what…
