Articles about spinal muscular atrophy


Friendship Inspires One Girl to 'Light Up the World' for SMA Awareness

Last updated: 08/15/2019

Meet Daily Point of Light Award honoree Bailey Walter. Read her story and nominate an outstanding volunteer, family or organization as a Point of Light. “In elementary school,...

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UK SMA Awareness Week (23rd - 30th Sept 2017) - The SMA Trust

Last updated: 08/14/2019

The SMA Trust & our partners are once again working together to raise awareness of the inherited neuromuscular condition; Spinal Muscular Atrophy (SMA). This years campaign...

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Indiana man with genetic disorder travels Europe in friend's backpack

Last updated: 08/13/2019

Kevan Chandler and three of his friends have been backpacking in Europe since June. What makes the group unique? Chandler has a genetic disorder and is being carried by his...

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Biogen's Spinraza Surpassing Expectations as More Insurers Cover It or Relax Coverage Restrictions

Last updated: 08/12/2019

Biogen’s Spinraza (nusinersen), an expensive but lifesaving medication for thousands of babies born with spinal muscular atrophy (SMA), is becoming available to more and more...

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Not Everyone Who Has SMA Wants Spinraza ... and That's OK

Last updated: 08/08/2019

December 23, 2016 was a big day for my family and me. Not only did my sister go into labor with she and her husband’s first child on this day, but it also was the day it was...

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Two Young Sisters Cope With Rare Muscle Wasting Disease

Last updated: 08/06/2019

Around the time of Brielle Kennedy's first birthday, her parents, Sarah and Eric, noticed that her physical development was a little slow. "Our pediatrician told us not to...

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Toddlers With Muscle Disease Get Tiny Wheelchairs So They Can 'Just Be One Of The Kids'

Last updated: 08/05/2019

A group of college students have created a custom-sized, zippy new wheelchair for two kids who are unable to walk or crawl -- and it’s one sweet ride. Five students at Brigham...

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Update from NHS England meeting about the SMA Type 1 EAP - The SMA Trust

Last updated: 08/05/2019

Lead clinicians, centre service managers and SMA Support UK attended a meeting on 6th June on the expanded access programme (EAP) for nusinersen. Due to the election ‘purdah’...

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Connelly: My Wish emotions run deep

Last updated: 08/04/2019

At least that's how I've gotten through the 180 or so individual interviews we've conducted over the past 11 years with our My Wish families. Yes, my fingernails have carved...

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Spinal Muscular Atrophy News - The SMA Trust

Last updated: 08/04/2019

Biogen: EAP for SMA Type 1 is planned to stay open until year end 18 July 2017 In response to a request from SMA Trust and SMA Support UK, Biogen has announced it’s current...

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