SMA News & Perspectives

We discuss a family that states Zolgensma saved all of their lives, and they share their families journey through gene therapy, Also, Community Development Manager Kevin Schaefer reads from Tyler Dukes' 31 Days of SMA story. Tyler shares his experiences with living independently. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, in...

SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Zolgensma has the potential to change the whole landscape of SMA. Also, Community Development Manager Kevin Schaefer reads from Melissa Milinovich's 31 Days of SMA story. Melissa shares her experiences as a parent who has SMA. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful informa...

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 sons, and their youngest, Luke, has SMA Type 2. Jason talks about his family, Spinraza, and a Star Wars Celebration story that makes Kevin insanely jealous. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful informat...

We discuss how European SMA advocates question the EU’s willingness to reimburse for Zolgensma. Also, SMA News Today forums moderator DeAnn Runge shares her perspective about claiming your independence while living with SMA. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for...

In the latest episode of the SMA News Today Podcast, hosts Kevin Schaefer and Michael Morale discuss updates regarding SMA therapies Spinraza and Reldesemtiv. Also, Kevin and columnist Brianna Albers share their experiences at the 2019 Cure SMA conference. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and...

In episode 37 of the SMA News Today Podcast, host Kevin Schaefer interviews Courtney Smith and her boyfriend Trevor Rogerson. They live in Seattle, Washington, and Courtney has SMA Type 2. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases....

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 attorney, and he has SMA Type 3." Photo Contributed by Mike Blakey Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment...

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. Topics include clinical trial updates from the 2019 American Academy of Neurology (AAN) Annual Meeting, as well as some of our recent forum posts and columns. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful informat...

We discuss how the survival rate is up for adults and children with neuromuscular disorders. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how showing respect and being kind, can improve not only your own life, but the lives of others. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including...

SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a study that finds how Leuprorelin Acetate may reduce swallowing dysfunctions in SBMA patients. Also, Community Development Manager Kevin Schaefer reads from his latest column, in which he describes how having SMA has sparked unique interactions with people. Are you interested in understanding gene therapy? ExploreGeneThe...

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 University, studying business management, and he has SMA Type II.” Photo Contributed by John Scurto Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it...

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-abled relationships by Ben Mattlin. Mattlin is a Los Angeles-based writer with SMA Type 2, and this review is available on our main website and on our forums. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful informat...

In episode 30 of the SMA News Today Podcast, Kevin Schaefer and Michael Morale discuss the latest news regarding Spinraza (nusinersen) and Zolgensma (AVXS-101). Both of these drugs are designed to treat SMA. Also, Kevin and Michael take a look at some of the trending discussion topics on the SMA News Today forums, as well as a recent column by Brianna Albers. Are you interested in understanding ge...

In episode 27 of the SMA News Today Podcast, Community Editor Kevin Schaefer interviews Michele Erwin, whose son Greyson has SMA. Michele is the founder of All Wheels Up, an organization dedicated to improving flight accommodations for wheelchair-users. In this interview, Michele talks about being a disability advocate, and how it coincides with parenting a child with SMA.

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 Director of Multimedia, Michael Morale, talks about how living with SMA, has never defined him as a person. Hard work and the pursuit of success was what guided him in his life. SMA is just a byproduct of something that he has to live with. Are you int...

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, and the hurdles he's faced throughout his life.

SMA News Today Community Editor Kevin Schaefer interviews Abby Quinn and Kristen Bathe -- childhood friends who run an inclusive fashion line for people with disabilities. Read all about them here: https://smanewstoday.com/forums/forums/topic/11323/

SMA News Today Community Editor Kevin Schaefer and Forums and Multimedia Director Michael Morale discuss the advantages of taking physical therapy while on active treatment with Spinraza. Kevin discusses his aquatic therapy and Michael discusses his traditional therapy using resistance bands and range of motion and isometric exercises.

SMA News Today Forums & Multimedia Director Michael Morale discusses the breaking news Zolgensma (AVXS-101) Under Priority FDA Review as Possible Gene Therapy for SMA Type 1. Read the full report here: https://smanewstoday.com/2018/12/04/zolgensma-avxs-101-under-priority-fda-review-as-possible-gene-therapy-for-sma-type-1/

SMA News Today Community Editor Kevin Schaefer and Forums Director Michael Morale discuss AveXis' filing for FDA approval of experimental small therapy AVXS-101.

In SMA News Today's 20th podcast episode, Community Editor Kevin Schaefer interviews veteran caregiver Randy Clark, who has worked with Kevin for four years.

SMA News Today Community Editor Kevin Schaefer and Forums Director Michael Morale interview one another in a new format that will feature more roundtable-style discussions about SMA. This podcast takes listeners through Kevin and Michael's unique life journeys with SMA and beyond, highlighting how living with the disease has not kept them from meeting their own life goals and dreams.

In SMA News Today's 17th podcast, Community Editor Kevin Schaefer interviews Shane Burcaw, author and Founder and President of the nonprofit "Laughing At My Nightmare."

In this special edition of the SMA News today podcast, Forums Editor Michael Morale discusses AveXis' recent announcement that experimental SMA gene therapy AVXS-101 has been submitted to the US Food and Drug Administration (FDA) for approval.

In SMA News Today's 16th edition of Community Editor Kevin Schaefer's podcast, Kevin interviews Brian Ronningen -- a 48 year-old Human Resources professional who has SMA type 2 -- about his experience growing up with the disease in the 70s and 80s, as well as his perspectives on employment for those with disabilities.