SMA News & Perspectives

SMA News & Perspectives

Daily, digital coverage of the latest SMA news and perspectives.

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Avsnitt(445)

Risdiplam Under FDA Review & How the Lack of SMA Protein May Also Directly Contribute to SMA

Risdiplam Under FDA Review & How the Lack of SMA Protein May Also Directly Contribute to SMA

Anticipation is growing as Roche/Genentech's treatment risdiplam, the first oral medication to treat SMA, is under FDA review. SMA News Today’s multimedia associate, Price Wooldridge, discusses how t...

16 Mars 20207min

Importance of Physical Therapy & Institute for Gene Therapies to Modernize Reimbursement Framework

Importance of Physical Therapy & Institute for Gene Therapies to Modernize Reimbursement Framework

SMA News Today’s Senior Director of Multichannel Content, Michael Morale, discusses the importance of physical therapy, and how physical therapy can not only help avoid problems, but also correct some...

13 Mars 20205min

COVID19, Spinraza, Bloating, SPC’s, Being Spontaneous & Transferring Out Of Wheelchair To Take a Nap

COVID19, Spinraza, Bloating, SPC’s, Being Spontaneous & Transferring Out Of Wheelchair To Take a Nap

In the forums a topic of discussion has been the thing that’s on everyone’s mind, the Novel Coronavirus, also known as COVID19. Spinraza has also been discussed. Other topics include bloating, SPC’s...

11 Mars 20205min

Being Spontaneous With SMA & How Body Composition May be a Biomarker of Motor Function in SMA

Being Spontaneous With SMA & How Body Composition May be a Biomarker of Motor Function in SMA

Spontaneity can be difficult when you have SMA. Sometimes it even takes planning. Forums moderator DeAnn Runge shares how she does it and is looking for advice on how to be even more spontaneous. S...

9 Mars 20206min

Maintaining Long-Distance Friendships & MDA Executive’s Discussion of Gene Therapies

Maintaining Long-Distance Friendships & MDA Executive’s Discussion of Gene Therapies

Forums Director Kevin Schaefer talks about maintaining long-distance friendships, particularly with people in the SMA community. SMA News Today’s multimedia associate, Price Wooldridge, details an MD...

6 Mars 20206min

Celebrating Rare Disease Day 2020 with #WhatMakesMeRareSMA & How Music Plays a Big Part in Life

Celebrating Rare Disease Day 2020 with #WhatMakesMeRareSMA & How Music Plays a Big Part in Life

February 29th was recognized as Rare Disease Day across the world. SMA News Today columnists shared what this day meant to them. A social media campaign was also successful in bringing awareness to ...

4 Mars 20206min

#53 - Interview with Alyssa Silva

#53 - Interview with Alyssa Silva

In episode 53, host Kevin Schaefer interviews our very own Alyssa Silva. Alyssa is from Cumberland, Rhode Island, and she is a columnist and forums moderator here at SMA News Today. She’s also the fou...

3 Mars 202044min

Public Interactions with People With Disabilities & Muscular Dystrophy Association Helping Others

Public Interactions with People With Disabilities & Muscular Dystrophy Association Helping Others

When it comes to public interactions with people who have disabilities there are no set rules. As someone who has a disability, DeAnn shares her thoughts on this topic. Also, listen to SMA News Toda...

2 Mars 20207min

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