Helping My Daughter Make Choices and Experience LifeI realized that we, as parents of a child with spinal muscular atrophy (SMA), were trying to do everything possible to meet...reactionscomments
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
My Reactions To Finding Out That My Daughter Had Spinal Muscular AtrophyMy experience with anticipatory grief (AG) began when Jessie was about 3 months old. She was not meeting her developmental goals compared...reactionscomments
Computer Assistive TechnologySymptoms of spinal muscular atrophy (SMA) can make it hard to use technology. Computer assistive devices and strategies can improve access. They...reactionscomments
This is Her SpaceAdvocacy is part of my daily life. I provide family support to newly diagnosed families, I share Emma’s story as a patient...reactions4comments
The Art of Chewing and Swallowing with SMAIf you’ve lived with spinal muscular atrophy for any length of time you expect to have weakness progress in your body. However...reactions3comments
Being a Parent of a Child with SMAI have talked about this a few times already. I have also read other parents' points of view on this site. I...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
Modifying Your Home for More IndependenceHaving an accessible home can help with some of the challenges of living with SMA. It can help with living more independently...reactionscomments
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
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
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
My Spark is Music, Not SMAThis year's theme for SMA Month was SMA does not define us. For Allie Williams, a patient leader for SpinalMuscularAtrophy.net, her life...reactions1comment
Gaming with a DisabilityRecently I went on a search to find an accessible hobby that didn’t include technology or staring at a screen. I didn’t...reactions6comments
Jessie’s First Grade Class Learns About DisabilitiesThe back story: My daughter Jessie, had spinal muscular atrophy [SMA]. She was the first handicapped child to be mainstreamed in our...reactions4comments
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
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
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
Grandparents Help Child with SMA Live LifeZelda's water had broken that night and off we went to the hospital, as planned. So, my wife, my parents, and her...reactionscomments
