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…
From Where I Sit - a Column by Halsey Blocher
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…
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 psychology. She uses her knowledge to…
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 differences that do occur only serve to make the movie stand…
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 food on the table, and financial stability are commonly counted among…
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 don’t always know the right advice to give, but I try…
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 gaming. If passionate, they might stretch these interests into adulthood. It’s…
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 felt like it. I enjoy a bit of spontaneity from time…
For my birthday last year, I wrote about how each year is a blessing. I still find that to be true. Each birthday is a cause for celebration, as none of them are guaranteed. When I was diagnosed with SMA as a baby, it came with…
