Newborn Genetic Screening for Spinal Muscular AtrophySpinal muscular atrophy (SMA) is a rare genetic condition that causes muscle weakness. SMA is caused by a mistake in a specific...reactionscomments
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
Caring For Our Daughter Born With Spinal Muscular Atrophy: One's Family ApproachWe were going to have a baby! My wife Zelda, water had broken that night and off we went to the hospital...reactionscomments
SMA and COVID-19Since late 2019, COVID-19 has become a household name. It has changed many aspects of daily life. Especially for those living with...reactionscomments
Tips for TravelWhether it's for vacation, business, a chance to visit far-away relatives or friends, or to attend a special event like a friend's...reactionscomments
Helpful Government ProgramsDepending where you live, your country or state may have different programs that you can access to help you manage disability caused...reactionscomments
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
Tips for Accessible HousingWe asked our patient leaders: What housing tips do you have for someone with spinal muscular atrophy (SMA)? Have you taken steps...reactionscomments
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
Tough DaysSome mornings you wake up and you just know the day is going to be tough. You want to stay in bed...reactions1comment
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
