SMA News Roundup June 2019

Spinal Muscular Atrophy: June Bi-Monthly Roundup

Since our last roundup, there has been continued focus in the spinal muscular atrophy (SMA) literature how best to treat the disease. There also continues to be research geared toward understanding the biology of the disease, as well as on SMA management, what it is...

Improving Sitting Balance For Patients With SMA

If you are working with a patient with SMA, you will most likely find that they are in their wheelchair full time. This makes sitting balance very important for many reasons. If they have good sitting balance, this will make traveling up and down...

Spinal Muscular Atrophy: Monthly Roundup

Much of the most recent research regarding spinal muscular atrophy (SMA) has focused on understanding the mechanisms mediating the disease as well as the clinical value of different pharmaceutical interventions. There have been several reviews on the latter topic,...
Zolgensma FDA approval SMA

FDA Approves AveXis’ Gene Therapy Zolgensma to Treat SMA in Children Up to Age 2

Zolgensma, a first gene therapy for spinal muscular atrophy — and first for any chronic neurologic disease — is now an approved and potential “one-time” intravenous treatment for pre-symptomatic newborns through 2-year-olds with any type of SMA, the U.S. Food and Drug...
sma contractures

Increasing Range of Motion in Ankles and Knees of Patients with SMA

For a patient with SMA to be able to function with their maximal amount of independence, it is important to have as much range of motion possible. As with the majority patients with SMA, my current patient with SMA spends most of his time in his wheelchair. Therefore,...

Orthopedics and Bracing Considerations for SMA

SMA provides myriad challenges to multiple people on the caregiving team.  As a prosthetist and orthotist, there are a few observations I have made over the years in terms of bracing considerations for SMA.  The first big question relates to whether to brace or not,...
nutrition in SMA

Key to a Healthy SMA Diet is Variety

Diet is one of the key factors for healthy growth and development in children with spinal muscular atrophy (SMA).  Often, the quality of the overall diet may be overlooked in favor of a single nutrient or food that comes with curative claims.  Over the last few years,...

Physical Therapy: Making Progress with a Patient with SMA

In Physical Therapy, our goal is to improve independence and return the patient back to within functional limits. With my current patient with SMA, his goal for physical therapy is to improve his core strength and neck strength. I am the first to admit, I was a little...
kidney stones

Kidney Stones and Spinal Muscular Atrophy

Spinal muscular atrophy (SMA) is an autosomal recessive, hereditary disease with a reported prevalence of 1 in 11,000 live births.[1]  As the disease affects motor neurons, the clinical manifestations relate to muscular weakness and atrophy.  The specific clinical...

Recovering from Pneumonia with SMA: How Diaphragmatic Breathing and Abdominal Strengthening Aides Recovery

 According to the article "Spinal Muscular Atrophy1," "with SMA the spared diaphragm, combined with weakened intercostal muscles, results in paradoxical breathing. Also with the involvement of bulbar motor neurons often tongue fasciculation, poor suck and swallow with...

Latest Articles from SMA HCP

SMA Healthcare & Research News Update: July 2019

SMA Healthcare & Research News Update: July 2019

Over the past couple of weeks, there have been several new publications regarding spinal muscular atrophy (SMA) treatment. There has also been continued work in the basic science that aims to provide more understanding of the disease as well as research providing...

Spinal Muscular Atrophy: June Bi-Monthly Roundup

Spinal Muscular Atrophy: June Bi-Monthly Roundup

Since our last roundup, there has been continued focus in the spinal muscular atrophy (SMA) literature how best to treat the disease. There also continues to be research geared toward understanding the biology of the disease, as well as on SMA management, what it is...

SMA Patient Columns

My Experience with the JACO Robotic Arm

Throughout my life, I have required assistance with the most basic tasks. Things like scratching my head, getting myself a drink, or picking something up off the floor are just a few items on a never-ending list of impossibilities. Fortunately, there is now technology...

The Amino Acid Diet and Its Benefits

Nutrition has always been a challenge for my daughter, Ella. And, in turn, it is a challenge for my wife and me. Due to Ella's disease, she has an increased amount of difficulty digesting long-chain fats (meats, cheeses, etc.) and she also has a hard time maintaining...

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