With apitegromab creating buzz in the SMA community lately, it’s doubtless that we’ve all entertained thoughts about it. While it is still waiting for FDA-approval, doctors may offer it to patients as an option, and we’ll have to make a decision.

I wondered: how many of us are keen to receive it? And what are the reasons that we might or…

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In a recent column I wrote, I critiqued how a new sci-fi, body horror series fell short in its rare disease representation. “The Beauty” does appear well-intentioned, but I wish the rare disease cases featured had more agency in the story.

That made me think: what are some aspects of living with SMA that the community at large would like to…

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Semester break in Singapore means my 13-year-old brother is home. If you have kids around you often, you know it’s time to plan entertainment and bonding time before you drive each other up the wall.

Sadly, it’s not easy to find accessible activities that active kids can enjoy.

I was hoping that if y’all have been or are in a similar…

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According to my dad (mid-50s, non-SMA), consuming food and supplements that promote collagen production supposedly helps. More collagen equals better cartilage, equals less joint pain.

You could look into traditional Chinese medicine (TCM), too. Obviously, discuss with your doctor before you receive any treatment or consume any supplement,…

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Being in the hospital isn’t easy; the conditions that land us in a ward alone are difficult to cope with. But it can be simpler and easier than juggling a million things in our regular lives, giving us a strange nostalgia for our time in the hospital.

I wrote about going through this myself recently, for my column. Don’t worry, I’m talking…

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When I opened SMA News Today to submit a draft the other day, a headline caught my eye: Women with SMA can have successful pregnancies with team-based care.

I was stunned. With all of the different health complications SMA and pregnancy can have, it seemed impossible to me to combine the two conditions, until I read the article. Not to mention…

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Anyone with SMA who’s visited a theme park will know the struggle of finding accessible attractions. It’s unfortunate, but though theme parks are technically accessible, in that you can access the grounds, they aren’t inclusive by way of not having many accessible rides. My friends and I experienced this back in Jan, as I detailed in …

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Valentine’s Day, I think, can be a complicated one to witness even without a disability. All those couples around, all that processed sugar on sale. Throw SMA into the mix, and it can be more of a struggle, as we may be dealing with health issues, social isolation, or being the single friend in the friend group.

This year, though, a friend of…

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Well, would you look at that? We have officially survived a full month of 2026. As such, I think it’s time for a self-care check-in.

How is everyone doing so far? Have you been taking care of yourselves? Manage to spoil yourself in between your responsibilities? Need some encouragement?

For some reason, Singapore’s largest English newspaper — The Straits Times — decided it’d be a good idea to interview me about what I’m reading these days. I’m assuming it’s because people know me primarily as a writer. A little sadly for both of us, the interview made me realize I’m not reading as many books as I want to.

Part of the problem…

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Today, on New Medical Anxieties For Sherry: Osteoporosis! All thanks to a study that says nonambulatory SMA children have weaker upper leg bones and my use of anti-inflammatories for chronic pain. Yay! 😅

This is the part where I ask if anyone here has gone through bone density testing and what it was like for you.

How did it come up with…

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Most of us who are familiar with SMA and general disability advocacy will have known Alice Wong. She was a force to be reckoned with, who lived with SMA until the age of 51 late last year. Both our news team and our Community Editorial Manager on his column, Kevin Schaefer, have written about her impact as an activist and a writer, for those…

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On behalf of myself and the SMA News Today team, happy new year! We hope you all had a restful holiday season and you’re ready for 2026.

We’re excited to be back with you — and to hear about what you’ve been up to and what you’re looking forward to.

Any resolutions for the year? Projects you’re on? Shows you’ve waited on to return? SMA-related…

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Apologies that I haven’t done a self-care check-in in a while – September to November was a time. If it was for you too, congratulations to all of us for making it through, seriously.

Take a moment for yourself. Ask if you managed to take care of yourself and treat yourself when you needed to. Share about how you’ve been if you wish. We all…

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Do you struggle with gift ideas? Me too. Add the need for them to be accessible, and things can get a little more complicated.

Now that Black Friday has blown past us, though, it might be a good idea if we helped each other out if we still haven’t bought something for our loved ones (or even ourselves!) Add some ideas below!

I wonder this too! Even for those of us who aren’t tube-fed but are on a formula-only diet for whatever reason (it was all I could consume on certain days last year), are we actually getting the claims on the tins? I can’t seem to find enough clinical evidence.

My mum may not be entirely comfortable with me spoiling her, but damn it if I don’t leave her a choice. 😂

I find the best way to take care of her, though, is to take errands off her shoulders or go to my medical appointments by myself. Helps her, like not everything is on her.

Did you know it’s National Family Caregivers Month? I didn’t until Halsey Blocher, our Columns Manager and another columnist at SMA News Today, pointed it out.

Relationships with our caregivers are always tricky, especially if they’re family or become family. It’s good to take a moment to ponder that. But I find that we don’t really talk about…

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According to a recent study, SMA patients process nutrition differently from non-SMA bodies. We require more carbs to generate energy. This explains my love for pasta, bread, and potatoes.

My question is, how will this knowledge affect us in our daily lives? Are we just going to keep consuming the way we’ve been consuming? Find new recipes or…

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Note: I am not a medical professional, and no one should take medical advice without consulting a board-certified physician responsibly. That being said…

Has anyone here found themselves the designated “healthcare advice” friend in their friendships?

It’s like, after I’ve had all these firsthand experiences in hospitals, people expect that I…

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Admittedly, I would not have decided to try acting out if I wasn’t forced by my chronic pain to take a year-long break from the video games industry. When I was first hospitalised for pain, I had a lot of momentum behind my video games career. I was taking writing classes from a BAFTA-winning game writer, I was up for a fellowship, I was being…

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Like a huge swath of the internet’s population, I have been grooving to Taylor Swift’s new album, “The Life of A Showgirl.” It’s such an exuberant vibe overall, but one lyric from the song “Opalite” keeps calling out to me: Failure brings you freedom.

I like it because sometimes it’s true. Sometimes, we must fall to get back up and climb to new…

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I’m coincidentally training a new caregiver right now, which is taking up a lot of mental bandwidth. One of the ways I’m trying to cope with the frustration on all sides is by visualising a shelf. My psychologist taught me the trick – I basically place everything I can’t deal with presently on the shelf. I tell myself I will deal with it all…

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Something I’ve come to love about my acting training is how it gets me out of my head. The only thing that matters when I am playing a character is what’s in front of me. Reactions don’t sound or feel natural otherwise. If I can’t get out of it, then it’s been my director’s and mentor’s job to help me.

With SMA, because our bodies are so limited…

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A friend of mine and I were talking about DMTs the other day, and how much I had gained from Evrysdi. I was kind of whining about how I thought I might have seen more progress, forgetting that she hadn’t until she reminded me. She took it with a lot of grace, thankfully.

But that did get me thinking of how I’d react to the same situation and…

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Feel free to chat about your favorite classics too!

What would Elizabeth Bennet be like if she had SMA? What would any character from the literary classics canon be like if they had SMA, for that matter?

While writing my most recent column, I had to try to come up with acting roles I’d only seen non-disabled people play but would be perfectly fine for a disabled actress to take on. Because I…

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Though I live in Singapore, one of the smallest and safest cities in the world, I kid you not that I believe it’s a miracle I’m here after getting lost in it. As you might’ve already read in my column, I can laugh about it now, but I got pretty scared about being somewhere without access to a train station.

Have y’all ever gotten lost? Were you…

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Also, do y’all think watching movies or listening to music counts as hobbies? I’ve heard they do for some people.

I have to admit, whenever someone asks me about my hobbies, I struggle. Unlike non-disabled people who don’t have SMA, my options are pretty limited, and anything that’s a passion of mine somehow turns into a job or a side hustle. I mean, I’m a video game journalist who also posts about how she does makeup on TikTok. That’s gaming,…

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I think my favorite joke that I’ve told about my condition came last year, when I was really struggling with the chronic pain from my kyphoscoliosis. I was talking to fellow SMA News Today columnist Brianna Albers, when I said, “The universe gave me kyphoscoliosis not just to confirm to me that I’m not straight, but that I am indeed…

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I used to joke with a friend that having a sibling completely rewires your sense of humor. Suddenly, your idea of fun is both torturing and protecting this other human being you’re related to — and no one who doesn’t have siblings understands it. The impact of SMA is similar, I’ve found. Some days, I’m joking about how much I dislike living…

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Dear Lord, August has been a crazy month for me. A good crazy, don’t get me wrong, but I’m wondering how I’ve found time to breathe. 😂

I’ve definitely managed to treat myself to naps and some great meals after my acting rehearsals, though! Who knew I could work up such an appetite…

It’s time for another bi-monthly self-care check-in!

How has everyone’s August been? Have you all managed to treat yourselves these past couple of months? Make sure you’re caring for your mental health as much as your physical.

I’ll share about how I’ve been doing below!

Besides Shalom, I also have a best friend with muscular dystrophy named Phoebe. That girl is a ball of chaos I can’t imagine my adult life without. I’ve written about her briefly in a few of my columns too.

Whenever I meet someone who has experience with a muscular dystrophy patient, I am always asked what the difference is with SMA. The symptoms seem so similar that people could mistake one for the other. I have to then explain that though the diseases manifest similarly, they are caused by different mechanisms and have to be medicated and cared…

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Hey Mike! Apart from briefly going through comments and posting topics here, I unfortunately haven’t been able to engage as much as I would have liked to recently. Life happened, etc. etc.

I have a quick moment before bed now, though, so I’d like to lend some of my thoughts, if that’s okay? Firstly, I will briefly say I didn’t intend for the…

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Besides “The Pitt,” I have to confess I’ve rewatched several episodes of “Grey’s Anatomy” over and over. 😅Even some of the more recent ones. Things may not feel the same as the early 2000s episodes, but I do enjoy the new surgical interns.

One of the shows I fell in love with over the summer is “The Pitt” — HBO Max’s new medical drama that showcases what the average 15-hour shift in an emergency room can look like. It’s so sensitively written, it really did remind me of being in the ER. Something about that comforts me, as I’ve written in my latest column.

If you have an…

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Hindsight is 20-20 — particularly if you have SMA. When part or all of your body is immobile, it’s easy for your brain to run away from you. As SMA News Today columnist Jasmine recently wrote about an emergency situation, “I can’t stop thinking, what if this happens again?”

Such reflection is bound to be more likely during SMA Awareness Month…

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If you’re interested, you can check out these columns:

• A safe space where LGBTQ+ and Disability Pride meet

• Finding the beauty in patiently developing a creative project

“What no one discusses is the significant emotional labor required to survive with SMA. You don’t just get through a crisis and move on. You repeat it over and over in your head. You dissect every second, wondering what could’ve gone differently. You memorize the details, try to prevent it from happening again, even when you know you…

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Sometimes, when we’re in the hospital, new hobbies are found. For me last year, it was watching makeup content creators on TikTok; whatever skills I learned from them, I’d later try out to re-train my arms on Evrysdi. But I noticed that there were very, very few creators who have neuromuscular disabilities, and thought I would jump into the…

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One surprising thing I have found recently, as I noted in my most recent column, is that SMA isn’t as much of an issue as I thought it would be? I’ve matched and flirted with a lot of people online. I even had a date with a couple in an open marriage. It does cut both ways, though – I have also matched with far too many people who weren’t…

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Growing up, my favorite film was Disney’s animated Beauty and the Beast. Like the Beast, I believed that if I were ever going to find someone who would date me with my SMA, they would have to learn to see past it to fall in love with me. Now that I am dating for real, though, I know things are more complicated than that – that I have to see past…

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I once injured my foot because someone came into the elevator before I was done turning to exit. Oh gosh, the issue with crowds bothers me to no end some days. You’re definitely not alone in wanting to ram people down sometimes – though I do try not to do that, in order to avoid confrontation. 😅

That’s great! Would you like to share how the people around you help you in this regard?

A golf tournament? That sounds really cool. Are you you able to play in any way? Or do you have the fun of just judging?

I have a love-hate relationship with summer myself. It’s when things slow down a bit, but also feels lethargic to me in Singapore’s humid weather.

My work event is an interpretive performance of my children’s book, Loud…

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