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Spinal Muscular Atrophy: June Bi-Monthly Roundup

by Nisha Cooch | Jun 18, 2019

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...

Spinal Muscular Atrophy: Monthly Roundup

by Nisha Cooch | Jun 3, 2019

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,...

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

by Michael Nace | May 24, 2019

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...

Reldesemtiv Improves Muscle Strength in SMA Patients, Trial Data Show

by Michael Nace | Aug 14, 2018

Reldesemtiv improved muscle strength for walking and respiration in a dose-dependent manner in spinal muscular atrophy (SMA) patients, data from a Phase 2 clinical trial show. As a fast muscle activator, reldesemtiv will not treat the underlying causes of SMA — a lack...

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Patient and Parent Perspectives on the Use of...

At the end of 2016, the U.S. Food and Drug Administration (FDA) approved nusinersen for the treatment of spinal muscular atrophy (SMA).1 ...Read more

Speech Therapy in Spinal Muscular Atrophy

According to the American Speech-Language-Hearing Association, speech therapists work to improve human communication, swallowing ...Read more

Spinal Muscular Atrophy: Fractures

Poor bone health is a consequence of Spinal Muscular Atrophy (SMA). Bone mineral density is significantly reduced1,2 in up to 50% of ...Read more

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RULM Can Assess Arms’ Function in Wider Spectrum of SMA Patients, Study Says

The Revised Upper Limb Module (RULM) is better than the conventional Upper Limb Module (ULM) at assessing the arms’ function in a ...Read more
Acquiring More Independence Is Exhausting, but Worth It

If someone asks me to speak in front of hundreds of people, I say “no problem.” Stick a needle in my neck for a Spinraza ...Read more
My Aunt’s Advice for Optimal Self-care

Second in a series. Read part one. This week, I sought advice from my aunt, Heidi McLaughlin, because she is a thoughtful, wise ...Read more

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