sma Archives

Run for a Reason: Cure SMA and the Pittsburgh Marathon

Post author:Heather
Post published: April 24, 2018
Post category:cure sma half marathon pittsburgh research sma
Post comments:0 Comments

My mom is a huge runner. It's her favorite way to decompress and relieve stress... plus, since she's helping my sister and I often, it's also her way to get…

Super Bowl Sunday, SMA Edition

Post author:Heather
Post published: February 5, 2018
Post category:documentary sma social media
Post comments:0 Comments

I will not lie - I am not really a huge football fan, which is basically a sin/illegal if you live in Pittsburgh. I am always excited about the musical…

The Spinraza Saga, So Far

Post author:Heather
Post published: January 17, 2018
Post category:Personal sma spinal muscular atrophy spinraza
Post comments:2 Comments

Today's post is a long one, but it's incredibly important to me, so please bear with me and read until the end! Image viaA little over a year ago, right…

Report in Review

Post author:Heather
Post published: January 12, 2018
Post category:disability film media movies report in review sma tv
Post comments:0 Comments

This past Sunday was the Golden Globes. I love watching award shows, and the Golden Globes are fun because they're a mix of movies and TV, so it's a little…

The Upside of Social Media

Post author:Heather
Post published: January 9, 2018
Post category:community connections facebook sma social media
Post comments:31 Comments

If you've read here before (or if you know me in person) you know that I have Spinal Muscular Atrophy (SMA) and I'm in a wheelchair. SMA is an incredibly…

Why I have a Feeding Tube

Post author:Heather
Post published: November 7, 2017
Post category:feeding tube Personal sma surgery weight
Post comments:5 Comments

A few years ago, I was going through a really rough time, health-wise. Because of my SMA, I've always weighed less than a normal person would - well under 100…

Currently Reading, 9/22/2017: What Graham-Cassidy Means For Me

Post author:Heather
Post published: September 22, 2017
Post category:healthcare medicaid Personal preexisting condition sma
Post comments:0 Comments

I don't want this blog to get too political, because health policy isn't the only thing I care about, but I also want to make people aware how much it's…

SMA Awareness Month, Volume 4: Traveling with SMA

Post author:Heather
Post published: August 30, 2017
Post category:new york city Personal sma travel traveling
Post comments:3 Comments

This is the last Wednesday in August, so this is going to be my last official SMA Awareness Month post of 2017. I've really enjoyed writing them, and I hope…

SMA Awareness Month, Volume 4 – Going to College

Post author:Heather
Post published: August 23, 2017
Post category:cmu college Personal sma
Post comments:2 Comments

It's move-in week for undergraduates in Pittsburgh this week, which reminded me that 11 years ago this week, I was moving into my freshman dorm at Carnegie Mellon University. That…

SMA Awareness Month, Volume 3 – Time and Effort

Post author:Heather
Post published: August 16, 2017
Post category:awareness Personal sma spinal muscular atrophy
Post comments:4 Comments

Dress: hereSocial media in general, and blogs/bloggers especially, are supposed to look effortless. There's a real tendency to make each post seem like it came together easily. I think that…