Making the Best of It...I recently watched a new movie based on a true story about a young man who unexpectedly became a quadriplegic due to...reactions1comment
This is Her Space...Advocacy is part of my daily life. I provide family support to newly diagnosed families, I share Emma’s story as a patient...reactions4comments
Living With SMA Type 2 at 49...You'd think, "OMGosh she’s bedridden or should be." I have been on my own since I was 28 and have had to...reactions5comments
Newborn Genetic Screening for Spinal Muscular Atrophy...Spinal 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 SMA...Note: 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 Fusion...I 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 School...I 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 Me...This 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 Me...August 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 Approach...We were going to have a baby! My wife Zelda, water had broken that night and off we went to the hospital...reactionscomments
Tips for Travel...Whether 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 Programs...Depending 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 19...Today 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 Disability...One of the biggest challenges of living with SMA is buying new clothes, especially pants. For me, it’s not possible to go...reactions2comments
Living My Life as a Computer...Hello, everybody! You can call me Smurf because that was given to me from my friends that I have met over the...reactions6comments
Tips for Accessible Housing...We asked our patient leaders: What housing tips do you have for someone with spinal muscular atrophy (SMA)? Have you taken steps...reactionscomments
Ainaa Farhanah...is a very active young artist from Malaysia. Her passion for arts since childhood is depicted in all her designs and paintings...
Raising a Girl...I have lived a life of always confirming my own personal safety. Once I had a child, the awareness grew exponentially. My...reactions2comments
Tough Days...Some 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 SMA...My parents never hid anything from me. I knew exactly what SMA meant. I knew the realities of my future even as...reactions2comments
