Spinal Muscular Atrophy (SMA) Symptoms, Diagnosis, Prognosis, and Treatment News Today

June 22, 2017
Cure SMA Pursues More Education and Better Clinical Trial Access, Capacity
News
Cure SMA announced the start of Phase 2 of its SMA Industry Collaboration, aiming to advance the development of ... Read more
June 21, 2017June 21, 2017
AveXis’ Gene Therapy AVXS-101 Edges Closer to Pivotal Trial for SMA Type 1
News
AveXis is working with the U.S. Food and Drug Administration (FDA) to overcome final regulatory hurdles before starting a ... Read more
June 21, 2017June 20, 2017
Daddy’s Bunny Suit Helps the Spinraza Go Down
Columns, Five Servings of Strength- a column by Michael Casten
Her lips quiver, but days before they sported a wide smile. She grabs for my hand in an attempt ... Read more
June 20, 2017June 20, 2017
Post-College Career Finds the Bright Side of a Broken System
Columns, Embracing My Inner Alien - a column by Kevin Schaefer
I’ve known for a long time that my post-college life would be a little unorthodox compared to that of ... Read more
June 19, 2017June 19, 2017
The Aftermath of My Amtrak Residency Trip, Part 1
Columns, The Wolf Finally Frees Itself - a column by Brianna Albers
I’ve been home for over a week now from my Amtrak residency, and while I wish I could say it’s ... Read more
June 15, 2017
UK’s SMA Trust Determined to Fund Research, Bring New Treatments to Patients
News
In the United Kingdom, the SMA Trust is working to promote research and development of new treatments for ... Read more
June 14, 2017June 14, 2017
Ready for the Rain: Quick Action Saves the Day
Columns, Five Servings of Strength- a column by Michael Casten
Just overhead, an ominous, black cloud lingers despite a gentle breeze. The sun shines brightly behind some errant white ... Read more
June 13, 2017
Campaign to Persuade States to Screen Newborns for SMA to Be Key Topic at Conference
News
A revved-up campaign to persuade the U.S. government to ask states to screen newborns for spinal muscular atrophy ... Read more
June 13, 2017June 12, 2017
Do I Hate It when People Tell Me that I’m an Inspiration?
Columns, Embracing My Inner Alien - a column by Kevin Schaefer
The other night I was hanging out with a friend from college at a downtown pub. As we sat ... Read more
June 12, 2017June 11, 2017
The Train Rides End and the Great Work Begins
Columns, The Wolf Finally Frees Itself - a column by Brianna Albers
We won’t die secret deaths anymore. The world only spins forward. We will be citizens. The time has come. ... Read more
June 8, 2017June 8, 2017
Anthem’s Insurance Policy for Spinraza Treatment Expands SMA Age Criteria
News
Anthem recently issued an updated insurance policy, expanding its coverage for the use of Spinraza (nusinersen), the first approved treatment for ... Read more
June 7, 2017June 7, 2017
Hurry Up and Stop: The Endless Counting of Batteries
Columns, Five Servings of Strength- a column by Michael Casten
Flashing lights, beeping sounds, and a host of power in her little grip. The Permobile C300 is Ella’s power ... Read more

June 22, 2017

Cure SMA Pursues More Education and Better Clinical Trial Access, Capacity

Cure SMA announced the start of Phase 2 of its SMA Industry Collaboration, aiming to advance the development of specific goals. “The SMA Industry Collaboration is a multifaceted partnership ... Read more

June 21, 2017June 21, 2017

AveXis’ Gene Therapy AVXS-101 Edges Closer to Pivotal Trial for SMA Type 1

News

AveXis is working with the U.S. Food and Drug Administration (FDA) to overcome final regulatory hurdles before starting a pivotal trial of AVXS-101 for the treatment of spinal muscular ... Read more

June 21, 2017June 20, 2017

Daddy’s Bunny Suit Helps the Spinraza Go Down

Columns, Five Servings of Strength- a column by Michael Casten

Her lips quiver, but days before they sported a wide smile. She grabs for my hand in an attempt to gain comfort, but a day before she gave me ... Read more

June 20, 2017June 20, 2017

Post-College Career Finds the Bright Side of a Broken System

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

I’ve known for a long time that my post-college life would be a little unorthodox compared to that of my friends. While most people who graduate either enter the ... Read more

June 19, 2017June 19, 2017

The Aftermath of My Amtrak Residency Trip, Part 1

Columns, The Wolf Finally Frees Itself - a column by Brianna Albers

I’ve been home for over a week now from my Amtrak residency, and while I wish I could say it’s been a relaxing couple of days, it hasn’t. I always ... Read more

June 15, 2017

UK’s SMA Trust Determined to Fund Research, Bring New Treatments to Patients

News

In the United Kingdom, the SMA Trust is working to promote research and development of new treatments for spinal muscular atrophy (SMA). By providing funding and bringing together researchers, ... Read more

June 14, 2017June 14, 2017

Ready for the Rain: Quick Action Saves the Day

Columns, Five Servings of Strength- a column by Michael Casten

Just overhead, an ominous, black cloud lingers despite a gentle breeze. The sun shines brightly behind some errant white clouds and blue skies peek out between. Slow, rolling movements ... Read more

June 13, 2017

Campaign to Persuade States to Screen Newborns for SMA to Be Key Topic at Conference

News

A revved-up campaign to persuade the U.S. government to ask states to screen newborns for spinal muscular atrophy will be a hallmark of this year’s SMA Conference in Orlando. The agenda ... Read more

June 13, 2017June 12, 2017

Do I Hate It when People Tell Me that I’m an Inspiration?

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

The other night I was hanging out with a friend from college at a downtown pub. As we sat down and ordered a couple of beers, an older gentleman ... Read more

June 12, 2017June 11, 2017

The Train Rides End and the Great Work Begins

Columns, The Wolf Finally Frees Itself - a column by Brianna Albers

We won’t die secret deaths anymore. The world only spins forward. We will be citizens. The time has come. Bye now. You are fabulous creatures, each and every one. ... Read more

June 8, 2017June 8, 2017

Anthem’s Insurance Policy for Spinraza Treatment Expands SMA Age Criteria

News

Anthem recently issued an updated insurance policy, expanding its coverage for the use of Spinraza (nusinersen), the first approved treatment for spinal muscular atrophy (SMA). The update revises the criteria for Spinraza in ... Read more

June 7, 2017June 7, 2017

Hurry Up and Stop: The Endless Counting of Batteries

Columns, Five Servings of Strength- a column by Michael Casten

Flashing lights, beeping sounds, and a host of power in her little grip. The Permobile C300 is Ella’s power wheelchair. A 304-pound purple machine that provides her with mobility. ... Read more