Voting With a Disability: What to KnowVoting is a fundamental American right, but it has special meaning for people with disabilities, like spinal muscular atrophy, or health conditions...reactions1comment
Making the Best of ItI recently watched a new movie based on a true story about a young man who unexpectedly became a quadriplegic due to...reactions1comment
About You: An Author and a Character with SMANote: This year's theme for SMA Month was SMA does not define us. For Chaz Hayden, a patient leader for SpinalMuscularAtrophy.net, his...reactions3comments
Emotional Effects of a Spinal FusionI know many things have advanced in the medical field especially when it comes to spinal fusions. I had mine done at...reactionscomments
Extra Assistance at SchoolI was talking to a mom who has a teen with SMA. They were asking me for advice on what kind of...reactions1comment
My Life as an Artist, Not SMA, Defines MeThis year's theme for SMA Month was SMA does not define us. For Ainaa Amaili, a patient leader for SpinalMuscularAtrophy.net, her life...reactions3comments
A Moment That Changed MeAugust is not just SMA awareness month, it is also a month when my sister passed away. 19 August 2013, a date...reactions5comments
Weight: Freshman 15 to the Covid 19Today I’m talking about weight. At some point in our lives, most of us deal with weight gain. Back in college, the freshman...reactionscomments
Shopping for Clothes with a DisabilityOne of the biggest challenges of living with SMA is buying new clothes, especially pants. For me, it’s not possible to go...reactions2comments
Raising a GirlI have lived a life of always confirming my own personal safety. Once I had a child, the awareness grew exponentially. My...reactions2comments
Fear of Death Because of SMAMy parents never hid anything from me. I knew exactly what SMA meant. I knew the realities of my future even as...reactions2comments
Making Forever FriendsMaking friends was never difficult for me as a young girl or even as a teenager. I have always been a pretty...reactions4comments
Side Effects from Stopping EvrysdiRecently I shared how my journey with Evrysdi stopped after taking the medication for over a year. This was for a few...reactions1comment
The FundraiserI wanted to give some insight about being receptive to the charity of well-meaning people. My coworkers were always supportive in listening...reactionscomments
The Pregnancy That Couldn't BeContent Note:This article describes the author's personal experience with pregnancy loss. I was 2 weeks late... I was never late. My heart...reactions1comment
That One Time in VegasNot everything that happens in Vegas stays in Vegas, especially when it comes to sharing stories. Like how I got upgraded to...reactions1comment
Tips for Finding Healthcare ProvidersIt can be difficult to find a provider who checks all the right boxes. A good relationship and someone who you can...reactions1comment
I Stopped Taking EvrysdiWhen SMA treatments first became available, I honestly wasn’t sure how I felt. At the time it was just Spinraza which I...reactionscomments
Day in the Life Without Your PCAI am coming up on my 12th year of using a personal care assistant (PCA), who isn't a personal relative. There are...reactionscomments
Dealing with Changes in SMASpinal muscular atrophy has a host of challenges we all deal with at some stage. While all of our journeys with SMA...reactionscomments
