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SpinalMuscularAtrophy news

Turlock family finds hope with new spinal muscular atrophy drug treatment

The Turlock Journal - Feb 22, 2017
Cash was born with spinal muscular atrophy, which is a neuromuscular disease that causes muscle atrophy and weakness. It's caused by a defect in the Survival Motor Neuron 1 gene, which obstructs the growth of proteins that feed and develop muscles.

Spinal Muscular Atrophy (SMA) Treatment Market : Market Sizing with Competitive Landscape by 2021

Medgadget (blog) - Feb 20, 2017
Spinal muscular atrophy (SMA) refers to a group of inherited diseases that affects the functioning of muscles because of deterioration. It typically results in weakness, and may even lead to death. SMA affects motor neurons present in the brain and ...

Latin ladies raise funds for children with spinal muscular atrophy

The Star Online - Feb 22, 2017
AT SIX-months-old, Muhammad Hazim Mohd Hafiz's parents found out through doctors that he had Spinal Muscular Atrophy (SMA). The five-year-old from Sungai Petani, Kedah is unable to crawl, stand nor move on his own. On a daily basis, he needs to be ...

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Spinal Muscular Atrophy books

Laughing at My Nightmare

by: Shane Burcaw

With acerbic wit and a hilarious voice, Shane Burcaw's Laughing at My Nightmare describes the challenges he faces as a twenty-one-year-old with spinal muscular atrophy. From awkward handshakes to having a girlfriend and everything in between, Shane handles his situation with humor and a "you-only-live-once" perspective on life. While he does talk about everyday issues that are relatable to teens, he also offers an eye-opening perspective on what it is like to have a life threatening disease.
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Spinal Muscular Atrophy: Disease Mechanisms and Therapy

Spinal Muscular Atrophy: Disease Mechanisms and Therapy provides the latest information on a condition that is characterized by motoneuron loss and muscle atrophy, and is the leading genetic cause of infant mortality. Since the identification of the gene responsible for SMA in 1995, there have been important advances in the basic understanding of disease mechanisms, and in therapeutic development.

This book provides a comprehensive accounting of recent advances in basic and clinical research that covers SMA clinical features and standards of care, multifaceted aspects of SMN protein functions and SMA disease pathology, various animal models, and biomarkers, as well as current therapeutic development.
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Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity

by: Ben Mattlin
"An insightful, poignant, light-hearted and often hilarious memoir" (Jay McInerney).  Ben Mattlin lives a normal, independent life. Why is that interesting? Because Mattlin was born with spinal muscular atrophy, a congenital muscle weakness from which he was expected to die in childhood. Not only did Mattlin survive, he became one of the first students in a wheelchair to attend Harvard, from which he graduated and became a professional writer. His advantage? Mattlin's life happened to parallel the growth of the disability rights movement, so that in many ways he did not feel he was disadvantaged at all, merely different.
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The Me in the Mirror

by: Connie Panzarino
Writer, activist and artist Connie Panzarino was born in 1947 with the rare disease Spinal Muscular Atrophy Type III, formerly called Amytonia Congenita. Throughout a childhood filled with both pain and joy, she strove to define herself: "I knew I was different. Now I had a name for the difference, like being Italian or Jewish. I was an Amytonia. I didn't understand if that meant that I would never walk, or if all it meant was lack of muscle tone. I didn't know that most children with this disease die before they're five years old.
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Spinal Muscular Atrophy

This video was created with the intent to research SMA.-- Created using PowToon -- Free sign up at http://www.powtoon.com/join -- Create animated videos and ...

Roche in Spinal Muscular Atrophy

Spinal Muscular Atrophy (SMA) is the leading genetic cause of death in infants and toddlers and is associated with a high rate of childhood mortality in its most ...

U.S. FDA Approves Biogen’s SPINRAZA™ (nusinersen), The First Treatment for Spinal Muscular Atrophy

Video of the Farrell family who live in the U.S. Children Braeden and Kernen both have spinal muscular atrophy (SMA). MORE INFORMATION: ...

Finding a cure for spinal muscular atrophy (SMA)

Stephen Clark is on a mission to help his granddaughter Scarlet, who suffers from a rare, genetic condition call spinal muscular atrophy, or SMA. ◂ WXYZ 7 ...

Spinal Muscular Atrophy Treatment at Nationwide Children's -- Brett & Paige

Help us help kids like Brett. Please give by visiting ...