When an SMA diagnosis makes a headline — and when it doesn’t
SMA doesn’t usually make headlines unless the person affected is famous. When Jesy Nelson, former lead singer of Little Mix, shared that her newborn twin daughters had been diagnosed with…
Community Perspectives
Nothing prepared us for the SMA diagnosis of our surprise baby
My husband, Randy, and I had never considered leaving our hometown of Fort Worth, Texas. That all changed when Randy received an unexpected coaching offer in South Carolina. With little time to prepare for such a…
Why Universal Studios Singapore didn’t feel inclusive for me
The Lights, Camera, Action! attraction at Universal Studios Singapore was just as I remembered it. Without missed or delayed cues, fans blew harsh winds, sprinklers rained, sound effects thundered, lights flashed, and a ginormous boat barged…
Promising mouse study lays foundation for first gene therapy trial in SMARD1
Treatment with gene therapy significantly prolonged survival and improved motor function in a mouse model of spinal muscular atrophy with respiratory distress type 1 (SMARD1), researchers report. The gene therapy tested in this lab…
The ‘boondledorf’ and ‘moots’ that make up my winter survival guide
This January has been exceptionally and brutally cold! As a summer girl, a sun chaser, and an adult with spinal muscular atrophy (SMA), there are so many reasons why winter is my least favorite season.
With SMA, there’s ‘Stranger Things’ than feeling stuck sometimes
This post contains spoilers for the final season of Netflix’s “Stranger Things.” My level of devotion to the Netflix series “Stranger Things” dates back to the show’s premiere in the summer of 2016. As soon as…
Scoliosis, hip dislocations common in children with SMA, study finds
Children with spinal muscular atrophy (SMA) frequently develop what are known as musculoskeletal deformities, or bone and muscle-related problems that include scoliosis, a sideways curvature of the spine, and hip dislocations, according to a new study…
What the Patriots’ playoff mantra taught me about life with SMA
Lately, I’ve been asking myself whether what I have right now is truly enough to carry me through the hard seasons. It comes as the New England Patriots are heading to the AFC championship game. For…
Early C-section helped baby with SMA begin her treatment right away
For babies diagnosed with spinal muscular atrophy (SMA) before birth, doctors may be able to plan an early delivery so the baby can start treatment within days instead of waiting for a full-term birth. In…
SMA effects on development of nervous system worse than thought: Study
Spinal muscular atrophy (SMA) affects the nervous system — essentially, the body’s command center, where nerves transmit signals that coordinate actions, senses, and bodily functions — more profoundly than previously thought, a new study suggests.
Recent Posts
- FDA approves high-dose Spinraza regimen for new, existing SMA patients
- Don’t underestimate the power of disability representation
- New study explores links between BMI and motor function in children with SMA
- What Eric Dane’s passing reminded me about living with SMA
- Reflecting on our SMA assignment and lessons from Dr. Seuss