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

September 26, 2017September 26, 2017
Scholar Rock Secures U.S. Patent for Potential SMA Therapy Targeting Myostatin
News
The U.S. Patent and Trademark Office has issued a patent for antibodies that selectively bind and inhibit myostatin – a ... Read more
September 25, 2017September 21, 2017
I’m Not Normal, and That’s OK
Columns, The Wolf Finally Frees Itself - a column by Brianna Albers
I always get something out of my therapy sessions. Sometimes it’s a word or a phrase. I’ll never forget ... Read more
September 22, 2017September 21, 2017
Promise You Won’t Quit, OK?
Columns, Life, One Cup at a Time - a Column by Alyssa Silva
As much as I don’t like to admit it, sometimes life can be brutally unfair. I’m even hesitant to ... Read more
September 21, 2017September 22, 2017
Boston Rare Disease Film Festival to Feature SMA Documentary ‘Life & Atrophy’
News
This year’s Boston Rare Disease Film Festival will Feature an SMA Documentary Gareth Burghes’ documentary, Life & Atrophy, which ... Read more
September 20, 2017September 19, 2017
Machines are Just One Part of Caregiving — 24/7/365
Columns, Five Servings of Strength- a column by Michael Casten
Our nights are broken up by machines beeping, or Ella calling for us to reposition her as she sleeps. ... Read more
September 19, 2017September 18, 2017
One Year Since I Attempted Stand-up Comedy
Columns, Embracing My Inner Alien - a column by Kevin Schaefer
The other day Facebook reminded me that a year ago I gave stand-up comedy a shot at an open ... Read more
September 19, 2017September 19, 2017
Cure SMA to Host Webinar Today on Spinraza Access
News
Cure SMA will host a webinar on spinal muscular atrophy (SMA) today at 1 p.m. EST. The event ... Read more
September 18, 2017September 15, 2017
Saying No to Shame, Embarrassment and Difficult Physical Activities
Columns, The Wolf Finally Frees Itself - a column by Brianna Albers
I’m writing this in the car again, off to Iowa for a weekend of family visits. It was a ... Read more
September 15, 2017September 14, 2017
Life Before and After Spinraza, Part 2
Columns, Life, One Cup at a Time - a Column by Alyssa Silva
Second in a series. Read Part 1 here. There’s a certain significance that Dec. 4 holds in my life. ... Read more
September 13, 2017September 12, 2017
Adjusting to Overnight Feeding and More Solid Foods
Columns, Five Servings of Strength- a column by Michael Casten
Ella has lost five pounds over the past month, which has been the result of a dietary change. Before ... Read more
September 12, 2017September 14, 2017
My New Role Here at ‘SMA News Today’
Columns, Embracing My Inner Alien - a column by Kevin Schaefer
Since April, I’ve been writing this weekly column, and I’ve enjoyed every minute of it. Telling my story here ... Read more
September 12, 2017September 13, 2017
Ionis Earns $40 Million Spinraza SMA Regulatory Milestone Payment From Biogen
News
Ionis Pharmaceuticals has received $40 million in milestone earnings from Biogen following Japanese regulatory approval of the price of Spinraza, Biogen’s ... Read more

September 26, 2017September 26, 2017

Scholar Rock Secures U.S. Patent for Potential SMA Therapy Targeting Myostatin

The U.S. Patent and Trademark Office has issued a patent for antibodies that selectively bind and inhibit myostatin – a protein that naturally prevents muscle mass growth. This new patent ... Read more

September 25, 2017September 21, 2017

I’m Not Normal, and That’s OK

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

I always get something out of my therapy sessions. Sometimes it’s a word or a phrase. I’ll never forget when my therapist told me that, even in the midst ... Read more

September 22, 2017September 21, 2017

Promise You Won’t Quit, OK?

Columns, Life, One Cup at a Time - a Column by Alyssa Silva

As much as I don’t like to admit it, sometimes life can be brutally unfair. I’m even hesitant to type these words because it seems as though everyone is ... Read more

September 21, 2017September 22, 2017

Boston Rare Disease Film Festival to Feature SMA Documentary ‘Life & Atrophy’

News

This year’s Boston Rare Disease Film Festival will Feature an SMA Documentary Gareth Burghes’ documentary, Life & Atrophy, which runs 24 minutes, will be part of Disorder: The Rare ... Read more

September 20, 2017September 19, 2017

Machines are Just One Part of Caregiving — 24/7/365

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

Our nights are broken up by machines beeping, or Ella calling for us to reposition her as she sleeps. Having a child with SMA means interrupted sleep is par ... Read more

September 19, 2017September 18, 2017

One Year Since I Attempted Stand-up Comedy

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

The other day Facebook reminded me that a year ago I gave stand-up comedy a shot at an open mic night. My local comedy club does open mic sessions ... Read more

September 19, 2017September 19, 2017

Cure SMA to Host Webinar Today on Spinraza Access

News

Cure SMA will host a webinar on spinal muscular atrophy (SMA) today at 1 p.m. EST. The event focuses on access to Spinraza — the only U.S. government-approved therapy to treat ... Read more

September 18, 2017September 15, 2017

Saying No to Shame, Embarrassment and Difficult Physical Activities

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

I’m writing this in the car again, off to Iowa for a weekend of family visits. It was a busy week, so I’m looking forward to a couple of ... Read more

September 15, 2017September 14, 2017

Life Before and After Spinraza, Part 2

Columns, Life, One Cup at a Time - a Column by Alyssa Silva

Second in a series. Read Part 1 here. There’s a certain significance that Dec. 4 holds in my life. What started as an ordinary day morphed into the day ... Read more

September 13, 2017September 12, 2017

Adjusting to Overnight Feeding and More Solid Foods

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

Ella has lost five pounds over the past month, which has been the result of a dietary change. Before this change, she was primarily getting her nutrition via G-tube, ... Read more

September 12, 2017September 14, 2017

My New Role Here at ‘SMA News Today’

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

Since April, I’ve been writing this weekly column, and I’ve enjoyed every minute of it. Telling my story here on SMA News Today and sharing my thoughts on a ... Read more

September 12, 2017September 13, 2017

Ionis Earns $40 Million Spinraza SMA Regulatory Milestone Payment From Biogen

News

Ionis Pharmaceuticals has received $40 million in milestone earnings from Biogen following Japanese regulatory approval of the price of Spinraza, Biogen’s treatment for spinal muscular atrophy. So far, Ionis has earned more ... Read more