#11 - Interview With Filmmaker Owen Kent

#11 - Interview With Filmmaker Owen Kent

SMA News Today Community Editor Kevin Schaefer interviews Owen Kent, a filmmaker who has SMA. Kevin and Owen met at the 2018 CureSMA Conference in Dallas about his SMA diagnosis and experience with the disease, as well as his next, upcoming film project.

Episoder(443)

Spinraza Gives Babies With Type 1 SMA Hope For a Healthy Life in North Macedonia

Spinraza Gives Babies With Type 1 SMA Hope For a Healthy Life in North Macedonia

We discuss how Spinraza gives babies with type 1 SMA in North Macedonia hope for a healthy life. Also, SMA News Today’s forums moderator, DeAnn Runge, shares how service dogs were introduced into her ...

23 Sep 20196min

Phase 2 Trial Shows Presymptomatic Spinraza Treatment to SMA Children Reaching Milestones

Phase 2 Trial Shows Presymptomatic Spinraza Treatment to SMA Children Reaching Milestones

Community Development Manager Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. We discuss how a phase 2 trial shows presymptomatic Spinraza treatment leads to SMA c...

20 Sep 20196min

The World’s First Alport Stamp is a Macedonian Mom’s Latest Win for Rare Disease Patients

The World’s First Alport Stamp is a Macedonian Mom’s Latest Win for Rare Disease Patients

Community Development Manager Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how the ...

18 Sep 20199min

#42 - Interview With Kyle Harris

#42 - Interview With Kyle Harris

In episode 42, host Kevin Schaefer talks with Kyle Harris from San Diego, California. Kyle talks about growing up with SMA Type 3, college, and accessibility in the modern world. Are you interested i...

17 Sep 201936min

RNA Therapy Delivered by Viral Vector May Hold Potential to Treat SMA

RNA Therapy Delivered by Viral Vector May Hold Potential to Treat SMA

We discuss how an RNA therapy that’s delivered by a viral vector may hold potential to treat SMA. Also, SMA News Today’s forums moderator, DeAnn Runge discusses how airlines do not allow wheelchair us...

16 Sep 20198min

Why Screening Tests For Zolgernsma’s Use Are Necessary & Motivational Post

Why Screening Tests For Zolgernsma’s Use Are Necessary & Motivational Post

Community Development Manager Kevin Schaefer reads from a motivational post in the SMA News Today forums. We discuss why screening tests and other steps for Zolgensma’s use are necessary.

13 Sep 20198min

SMA Candidate SRK-015 Shows Promise in Healthy Volunteers & More Independence

SMA Candidate SRK-015 Shows Promise in Healthy Volunteers & More Independence

SMA News Today’s Director of Multichannel Content, Michael Morale, discusses an ongoing trial that states how SMA candidate SRK-015 shows promise in healthy volunteers and Community Development Manage...

11 Sep 201910min

Study Says Children With SMA Are at Risk of Weak Bones And Fractures & More Independence

Study Says Children With SMA Are at Risk of Weak Bones And Fractures & More Independence

We discuss a study that suggests children with SMA are at risk of weak bones and fractures and Community Development Manager Kevin Schaefer talks about his journey toward more independence. Are you i...

9 Sep 20199min

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