SMA ::

Rare Disease Day and SMA

Every year on the last day of February, we celebrate Rare Disease Day – a day dedicated to raising awareness, engagement, and support for those living with or caring for someone with a rare disease. My disease, Spinal Muscular Atrophy (SMA), is one of those rare diseases! I put up an Instagram question box yesterday, and am answering a few of the questions that came up. I’ll also be answering more on Instagram, so make sure you’re following along there too!

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Celebrating Rare Disease Day

Today is Rare Disease Day – a day that acknowledges and celebrates the estimated 300 million (!!!) people with rare diseases. SMA is one of those diseases, so I’m one of those 300 million.

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Feeding Tube Questions and Answers

On Friday, I shared two pictures on Instagram for Feeding Tube Awareness Week. I’ve posted about my feeding tube a few times, I think – I had it placed in 2013, so I’ve had it for quite a while now! I think it’s super appropriate to post about on Valentine’s Day, because deciding to have my feeding tube surgery was possibly my biggest act of self-love, ever.

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Accidentally Adaptive: Drybar

I’m so excited to be back with another “accidentally adaptive” post – I’m planning to turn this into a series! If you didn’t see my first post about this puffer cape, the concept is that I’m sharing things that aren’t technically meant to be “adaptive,” but end up being accessible to me. The first one was a jacket, but this time it’s a place, and one of my favorite places at that – Drybar.

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Hi, I’m Heather!

Welcome to my corner of the internet! This is where I share reports on style, beauty, and my life living with spinal muscular atrophy.

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