SMA News & Perspectives
Episodes
#39 - Interview With Jason Bertsch
06 Aug 2019
Contributed by Lukas
In episode 39 of the SMA News Today Podcast, host Kevin Schaefer interviews Jason Bertsch from Greenfield, Indiana. Jason and his wife Kelly have two ...
European SMA Advocates Question The EU’s Willingness to Reimburse Zolgensma & Independence
05 Aug 2019
Contributed by Lukas
We discuss how European SMA advocates question the EU’s willingness to reimburse for Zolgensma. Also, SMA News Today forums moderator DeAnn Runge sh...
#38 - Roundtable Discussion - Discussion for July 2019
16 Jul 2019
Contributed by Lukas
In the latest episode of the SMA News Today Podcast, hosts Kevin Schaefer and Michael Morale discuss updates regarding SMA therapies Spinraza and Reld...
#37 - Interview With Courtney Smith And Trevor Rogerson
02 Jul 2019
Contributed by Lukas
In episode 37 of the SMA News Today Podcast, host Kevin Schaefer interviews Courtney Smith and her boyfriend Trevor Rogerson. They live in Seattle, Wa...
#35 - Interview With Mike Blakey
04 Jun 2019
Contributed by Lukas
In episode 35 of the SMA News Today Podcast, host Kevin Schaefer interviews Mike Blakey from Gainesville, Florida. Mike is a part-time CPA and attorne...
#34 - Roundtable Discussion - Discussion for May 2019
21 May 2019
Contributed by Lukas
In episode 34 of the SMA News Today Podcast, hosts Kevin Schaefer and Michael Morale talk about the latest SMA news and perspectives from May 2019. To...
Upper Survival Rate For Adults And Children With Neuromuscular Disorders & Being Kind
17 May 2019
Contributed by Lukas
We discuss how the survival rate is up for adults and children with neuromuscular disorders. Also, SMA News Today’s Director of Multichannel Content...
Study on How Leuprorelin Acetate Reduces Swallowing Dysfunctions in SBMA & Unique Interactions
15 May 2019
Contributed by Lukas
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a study that finds how Leuprorelin Acetate may reduce swallowing dysfun...
#33 - Interview With John Scurto
06 May 2019
Contributed by Lukas
In episode 33 of the SMA News Today Podcast, host Kevin Schaefer interviews John Scurto from Boca Raton, Florida. John is a senior at Florida Atlantic...
Spinraza for Most SMA Patients in China & Ben Mattlin's Book on Inter-abled Relationships
05 Apr 2019
Contributed by Lukas
We discuss how China has approved Spinraza for most SMA patients. Also, Community Editor Kevin Schaefer reads from his review of a book about inter-ab...
#30 - Roundtable Discussion - Featured Articles
25 Mar 2019
Contributed by Lukas
In episode 30 of the SMA News Today Podcast, Kevin Schaefer and Michael Morale discuss the latest news regarding Spinraza (nusinersen) and Zolgensma (...
Fatigue and Quality of Life in SMA Patients Not Related? & Not Letting SMA Define You as a Person
11 Feb 2019
Contributed by Lukas
We discuss a study where perceived fatigue was not linked to physical factors regarding the quality of life in SMA patients. Also, SMA News Today’s ...
#27 Interview With Michele Erwin
11 Feb 2019
Contributed by Lukas
In episode 27 of the SMA News Today Podcast, Community Editor Kevin Schaefer interviews Michele Erwin, whose son Greyson has SMA. Michele is the found...
#25 - Interview With Tyler Dukes
07 Jan 2019
Contributed by Lukas
SMA News Today Community Editor Kevin Schaefer interviews Tyler Dukes. Tyler has SMA Type 2, and he shares his perspectives about growing up with SMA,...
#24 - Abby Quinn & Kristen
16 Dec 2018
Contributed by Lukas
SMA News Today Community Editor Kevin Schaefer interviews Abby Quinn and Kristen Bathe -- childhood friends who run an inclusive fashion line for peop...
#23 Roundtable Discussion - Importance Of Physical Therapy
07 Dec 2018
Contributed by Lukas
SMA News Today Community Editor Kevin Schaefer and Forums and Multimedia Director Michael Morale discuss the advantages of taking physical therapy whi...
#22 SPECIAL EDITION - Zolgensma (AVXS - 101) Under Priority FDA Review
04 Dec 2018
Contributed by Lukas
SMA News Today Forums & Multimedia Director Michael Morale discusses the breaking news Zolgensma (AVXS-101) Under Priority FDA Review as Possible Gene...
#21 - Roundtable Discussion Of AVXS - 101
26 Nov 2018
Contributed by Lukas
SMA News Today Community Editor Kevin Schaefer and Forums Director Michael Morale discuss AveXis' filing for FDA approval of experimental small therap...
#20 Interview With Randy Clark
16 Nov 2018
Contributed by Lukas
In SMA News Today's 20th podcast episode, Community Editor Kevin Schaefer interviews veteran caregiver Randy Clark, who has worked with Kevin for four...
#19 - Interview With Michael Morale
07 Nov 2018
Contributed by Lukas
SMA News Today Community Editor Kevin Schaefer and Forums Director Michael Morale interview one another in a new format that will feature more roundta...
#17 - Interview With Shane Burcaw
23 Oct 2018
Contributed by Lukas
In SMA News Today's 17th podcast, Community Editor Kevin Schaefer interviews Shane Burcaw, author and Founder and President of the nonprofit "Laughing...
#18 SPECIAL EDITION - AveXis Announcement For FDA Approval Of AVXS101
22 Oct 2018
Contributed by Lukas
In this special edition of the SMA News today podcast, Forums Editor Michael Morale discusses AveXis' recent announcement that experimental SMA gene t...
#16 - Interview With Brian Ronningen
11 Oct 2018
Contributed by Lukas
In SMA News Today's 16th edition of Community Editor Kevin Schaefer's podcast, Kevin interviews Brian Ronningen -- a 48 year-old Human Resources profe...
#15 - Byron And Moriah Potter
17 Sep 2018
Contributed by Lukas
In the 15th episode of the SMA News Today podcast, Community Editor Kevin Schaefer interviews Byron and Moriah Potter -- parents of two children who h...
#14 - Interview With Amber Bosselman
22 Aug 2018
Contributed by Lukas
In SMA News Today's 14th podcast, Community Editor Kevin Schaefer interviews college student Amber Bosselman, who talks about her diagnosis as a child...
#13 - Interview With Ann Heathcote
31 Jul 2018
Contributed by Lukas
SMA News Today Community Editor Kevin Schaefer interviews Ann Heathcote -- a college student with SMA type 2.
#12 - Interview With Kristin Walters
05 Jul 2018
Contributed by Lukas
24 year-old Kristin Walters talks to SMA News Today Community Editor Kevin Schaefer about overcoming depression, travel to Europe with SMA, and her ex...
#11 - Interview With Filmmaker Owen Kent
02 Jul 2018
Contributed by Lukas
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 Dal...
#10 - Friederike And Anna Wittchen From #CureSMA 2018
21 Jun 2018
Contributed by Lukas
#10 - Friederike And Anna Wittchen From #CureSMA 2018 by SMA News Today
#9 - Interview With Israel & Rio Landa
04 Jun 2018
Contributed by Lukas
SMA News Today Community Editor Kevin Schaefer interviews Israel and Rio Landa, both medical professionals whose son Mateo has type 2 SMA. Israel and ...
#8 - Interview With Wheelchair Rapunzel Founder Alex Dacy
26 Apr 2018
Contributed by Lukas
In SMA News Today's 8th podcast, Community Editor Kevin Schaefer interviews Wheelchair Rapunzel Founder Alex Dacy. Visit the site here: https://www.wh...
SMA News & Perspectives - April 24, 2018
24 Apr 2018
Contributed by Lukas
SMA News & Perspectives - April 24, 2018 by SMA News Today
#7 - Interview With SMA Parent & Adyn's Dream Founder Brian Bucher
29 Mar 2018
Contributed by Lukas
SMA News Today Community Editor Kevin Schaefer interviews Brian Bucher -- a parent of a child with SMA and founder of Aydn's Dream. Brian talks about ...
SMA News & Perspectives - March 28, 2018
29 Mar 2018
Contributed by Lukas
SMA News & Perspectives - March 28, 2018 by SMA News Today
SMA News & Perspectives - March 7, 2018
07 Mar 2018
Contributed by Lukas
SMA News & Perspectives - March 7, 2018 by SMA News Today
#6 - Paul Guarino, Founder of PG Sports
01 Mar 2018
Contributed by Lukas
SMA News Today interviews PG Sports Founder Paul Guarino. Visit the PG Sports homepage at: https://pg-sports.com
#5 - Interview With Brynne Willis, Johns Hopkins University Graduate Student
13 Feb 2018
Contributed by Lukas
In SMA News Today's fifth podcast, Community Editor Kevin Schaefer interviews Brynne Willis. Brynne is a graduate student at Johns Hopkins University ...
#4 - Interview With Dr. Danielle Sheypuk
22 Jan 2018
Contributed by Lukas
SMA News Today Community Editor interviews Dr. Danielle Sheypuk. Danielle is a renowned clinical psychologist with SMA who focuses her research on SMA...
#3 - Interview with Amazon Operations Manager Josh Garrison
12 Dec 2017
Contributed by Lukas
In SMA News Today's third podcast, Community Editor Kevin Schaefer interviews Josh Garrison -- a person with SMA type 2 who works as an operations man...
SMA News & Perspectives - November 28, 2017
30 Nov 2017
Contributed by Lukas
SMA News & Perspectives - November 28, 2017 by SMA News Today
#2 - Interview With Author Ben Mattlin
13 Nov 2017
Contributed by Lukas
SMA News Today Community Editor Kevin Schaefer interviews author Ben Mattlin. His new book, "In Sickness and in Health: Love, Disability, and a Quest ...
SMA News & Perspectives, October 24: Amino Acid Diet - JACO Robotic Arm
24 Oct 2017
Contributed by Lukas
Today's flash briefing talks about the amino acid diet in SMA management, and KINOVA's JACO robotic arm for SMA patients.
#1 - Interview With Christine Getman of Magic Wheelchair
19 Oct 2017
Contributed by Lukas
In SMA News Today's first podcast, Community Editor Kevin Shaefer interviews Christine Getman Director of the organization Magic Wheelchair. She talks...