Q1: What do you do at Bionews as a columnist and a leader?

A: I joined the SMA News Today team almost six years ago. My column is called “From Where I Sit.” I’ve been doing that pretty regularly ever since. It’s really cool to be able to get the opportunity to share my story as someone with SMA. My role kind of developed and progressed into leadership over the years. I like to say that being a leader was the job I didn’t know I wanted. As a columns manager, I oversee our columns team of 105 columnists around the world. That can be everything from scheduling, answering questions, and any one-on-one help our columnists need.

Q2: What is it that you’re hoping to achieve as a writer and a leader through your own column work?

A: Writing is my childhood dream. I always wanted to write, specifically about SMA–a lot of people don’t want to do that. My goal is to give people a glimpse into what life is like with spinal muscular atrophy. I also want to challenge people to find the positives in every situation. SMA sounds like a bad thing, but there’s still a lot of goodness in that life whether you’re someone who is living with SMA yourself, a caretaker, or in a totally different situation altogether.

Q3: One of Bionews’ unique differentiators is its unwavering commitment to the patient perspective. Can you speak to that and how important it is to you?

A: It’s honestly not just a patient perspective. It’s about caregivers, too. Both are super important to me. That’s why I incorporate my family and my mom into my column as they are big elements for every patient. I try to give people little glimpses of what I go through in my day. People can relate to the challenges and feelings of that. I like to make those connections so people can find what they relate to and apply it to their life, even if it’s nothing like mine.

Q4: Can you reference a moment or memory of yours as a columnist that stood out to you as making an impact?

A: There are so many moments. One of the things I love most about writing is seeing how people respond and react to my work. I share all of my columns on social media and have a handful of very loyal readers who I didn’t know before but have become much closer to them through my work. One woman reads my columns and always responds with a ton of support. It’s always so encouraging and affirming that I’m doing something important.

Q5: In one of your columns, you talk about being an influencer. Can you expand on what it means to you as a writer?

A: A lot of that column truly was inspired by the blog post I referenced by a good friend of mine named Connie Chandler. These columns are reaching people around the world. People we’ve never met. You are having an impact on someone. To me, it’s important to keep that in mind in my writing and in life in general. I’m having an impact on people, and I want to make sure it’s a positive one.

Q6: How would you say Bionews positions itself differently than other digital health companies?

A: It’s those authentic relationships. Being able to connect with your coworkers and readers. We have an amazing culture here. Everyone is willing to help everyone and step in where they are needed. All of that centers around the importance of patient and caregiver voices. We are important within the company. Bionews makes sure the world knows that we deserve to be heard. I would honestly love to see more companies follow in that same path.

Q7: What does it mean to you that you get to do what you do at Bionews?

A: It means the world to be a part of something that is making a difference. I wake up every morning excited to log into work. I wish that’s a feeling everyone had at their job. It’s such a valuable, positive experience that I get to share with the rest of the world.

We’re thankful to Halsey and her taking the time to share her insights! We invite you to read Halsey’s column “From Where I Sit” to learn more about her and her journey with SMA. She pulled together five of her favorite articles below that are the perfect place to start! Read more>>

Leaning on support networks doesn’t negate our independence

A modern era of wheelchair-accessible time travel is finally here

Celebrating a new treatment for a different rare disease

A Butterfly’s Beauty Comes After a Period of Darkness

Mexican Day of the Dead Helps Us Joyfully Remember Loved Ones