Personal Care AssistantsMany people with spinal muscular atrophy hire a personal care assistant to provide a wide range of tasks, from personal care, meal...reactionscomments
Where Does This Leave Siblings?That has been the question for our family for 39 years. I’m sure every parent asks themselves that often. My experience is...reactions1comment
The Decision to Change our Lifestyle for our DaughterJessie and her brother were born twins. It is important to realize that she was diagnosed with spinal muscular atrophy (SMA) at...reactionscomments
A Village of Healthcare ProfessionalsWe quickly needed a village of professionals. Our daughter, Jessie, was born with spinal muscular atrophy (SMA) back in 1974. We quickly...reactionscomments
Finding Financial Assistance for TreatmentMany illnesses, such as spinal muscular atrophy, come with steep price tags. Once you have a diagnosis, navigating treatment expenses can be...reactionscomments
My Good Days: A Resource for Financial HelpI’ve talked about the “disability tax” in previous articles. You’ll hear people who have a physical disability use this term. It basically...reactions1comment
That Hospital Stay and One Nurse in the ICUIn 1974, my wife and myself were frightened when the Pediatric Neurologist diagnosed my daughter, Jessie, with spinal muscular atrophy (SMA) when...reactions3comments
Finding HalloweenThe festive side of the year is around the corner, and that always gets me excited! A key part of living with...reactions2comments
Breaking the SMA BarriersEveryone has to deal with barriers. When we think of spinal muscular atrophy we probably assume these barriers are physical. I want...reactions1comment
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
