Lack of Accessible Ubers...In May, I was out to dinner with my girlfriend Suzanne and a few of my old colleagues. After dinner, Suzanne wanted...reactionscomments
My Ewok Companion...In the vast and colorful world of dog adoption, there are countless tales of furry companions who found their forever homes. These...reactions1comment
How Alexa Became One of My Disability Must-Haves...I was talking to my Public Partnerships consultant a few weeks ago (PP is a program where I live where someone you...reactions2comments
Struggling to Find the Right Fit...It can be frustrating shopping for clothes that fit my body comfortably, especially dress clothes. I am at an age now where...reactions1comment
Emerging Drugs...People with spinal muscular atrophy (SMA) have mutated SMN1 genes. This leads to low levels of the “survival of motor neuron” (SMN)...
Spinal Fusion Surgery for Spinal Muscular Atrophy...Progressive back muscle weakness often leads to scoliosis (curvature of the spine) in people with spinal muscular atrophy (SMA). Scoliosis is very...
Complementary and Alternative Medicine...Treatment of spinal muscular atrophy (SMA) should focus on therapies with proven clinical benefit. This includes disease-modifying treatments that have been approved...
Disease-Modifying Drugs for Spinal Muscular Atrophy...As of 2024, the United States Food and Drug Administration (FDA) has approved 3 drugs to treat spinal muscular atrophy (SMA). They...
Remembering My Spinal Fusion Surgery...When I was younger, I had a 90-degree curve in my spine due to scoliosis from spinal muscular atrophy (SMA). My torso...reactionscomments
What Is a Tracheostomy?...Weak chest muscles can make breathing difficult for children with spinal muscular atrophy (SMA). This is because their lungs may not fully...
Non-Invasive Breathing Support (NIV)...People with spinal muscular atrophy (SMA) often have difficulty breathing because of chest muscle weakness. Breathing support can make sure they get...
Cough Assistance for Spinal Muscular Atrophy...Coughing is an important way to clear mucus and other secretions from our airways. This helps prevent the airways from getting blocked...
Zolgensma (onasemnogene abeparvovec-xioi)...In 2019, the US Food and Drug Administration (FDA) approved Zolgensma (onasemnogene abeparvovec-xioi) to treat children under 2 years old with spinal...
Nissen Fundoplication Surgery...A surgical procedure called Nissen fundoplication can treat acid reflux in people with spinal muscular atrophy (SMA). Acid reflux happens when stomach...
Spinraza (nusinersen)...In 2016, Spinraza (nusinersen) became the first drug approved by the US Food and Drug Administration (FDA) to treat children and adults...
Surgery and SMA...Treatment of spinal muscular atrophy (SMA) focuses on maintaining motor function, improving quality of life, and preventing complications. This usually includes physical...
Physical and Occupational Therapy for Spinal Muscular Atrophy...Muscle weakness is the most obvious symptom of spinal muscular atrophy (SMA). It varies for every person, depending on disease severity. How...
Who Treats Spinal Muscular Atrophy?...People with spinal muscular atrophy (SMA) require ongoing, specialized care from a team of doctors and other health specialists. The team is...
Forced Poverty in the Disability Community...From an early age, individuals with disabilities face a unique set of financial challenges. For me, these challenges began at 16, a...reactionscomments
Buying My First Home...After almost 2 years of searching and being outbid, my dream of becoming a homeowner has come to fruition. I would imagine...reactionscomments
