SMA News & Perspectives

SMA News & Perspectives

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

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Episoder(445)

#47 - Interview With James Ian

#47 - Interview With James Ian

In episode 47, host Kevin Schaefer talks with James Ian from Los Angeles, California. James is a singer, songwriter, and actor, and he has SMA Type 3. Kevin and James talk about music, living with SMA...

3 Des 201936min

#46 Roundtable Discussion - Discussion for November 2019

#46 Roundtable Discussion - Discussion for November 2019

In episode 46, hosts Kevin Schaefer and Michael Morale discuss the latest news regarding Roche and Genentech’s experimental therapy Risdiplam. We also talk about AveXis’ decision to put its STRONG tri...

19 Nov 201927min

#45 - Interview With Jim And Becky Berry

#45 - Interview With Jim And Becky Berry

In episode 45, host Kevin Schaefer talks with Jim and Becky Berry from Myrtle Beach, South Carolina. Jim and Becky share their experiences as parents of two sons with SMA, and they talk about the life...

5 Nov 201941min

Embracing The Imaginative Spirit of Halloween & SMA News Today Forums

Embracing The Imaginative Spirit of Halloween & SMA News Today Forums

Forums Director Kevin Schaefer talks about embracing the imaginative spirit of Halloween. Forums moderator DeAnn Runge shares what’s been going on in the forums over the past week. Topics include heal...

30 Okt 20195min

#44 - Roundtable Discussion - Discussion for October 2019

#44 - Roundtable Discussion - Discussion for October 2019

Hosts Kevin Schaefer and Michael Morale discuss the latest news regarding SMA therapies Spinraza and Risdiplam, as well as some of our recent columns. Listen here, and share your thoughts in the SMA N...

15 Okt 201928min

Problems With Metabolising Fat Molecules Are Worrisome In SMA Children & Being Inspirational

Problems With Metabolising Fat Molecules Are Worrisome In SMA Children & Being Inspirational

SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a study that states that problems with metabolising fat molecules are evident and worrisome in SMA children and Forums Dire...

9 Okt 20199min

#43 - Interview With Jeff Olander

#43 - Interview With Jeff Olander

In episode 43, host Kevin Schaefer interviews Jeff Olander from Raleigh, North Carolina. Jeff is a PhD student at UNC-Chapel Hill, studying physics. He talks in this interview about his education, car...

1 Okt 201949min

Macedonian Gaucher Activist For Rare Disease Patients & Getting Ready For The Cold

Macedonian Gaucher Activist For Rare Disease Patients & Getting Ready For The Cold

We discuss a Macedonian Gaucher activist, whose publicizing the plight of rare disease patients. Although fall and winter are her least favorite seasons, DeAnn finds being prepared can help the transi...

30 Sep 20198min

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