Poor Spinraza Adherence Leads to More Illness, Healthcare Costs & December Can Be Bittersweet

We discuss how Asuragen is stating that a new screening kit, quickly and thoroughly analyzes SMN1 and SMN2 genes in the lab. & With all the variables that can come into play getting her Spinraza injection, DeAnn never feels totally at ease. She’s grateful for the opportunity and shares her journey to dose 10. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com

6 Tammi 20206min

We discuss how AveXis is unaware of the cause of inflammation, that led to the STRONG trial hold of AVXS-101. Forums Director Kevin Schaefer shares some of his highlights from this year. Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.

20 Joulu 201913min

In episode 48, hosts Kevin Schaefer and Michael Morale discuss the latest news regarding Roche and Genentech’s experimental therapy risdiplam. We also talk with our very own DeAnn Runge. DeAnn discusses the origins of her YouTube series “Dose of DeAnn.” She also explains why she shares her story of living with SMA with others.

17 Joulu 201924min

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, and media representation of people with disabilities. Photo cred: Travis Tanner Photography James Ian on Spotify: https://open.spotify.com/artist/0KpC5Kw93tkXOVPpNnVbuG?si=u2Ar4jVKSmyyTFaY_fyauA James Ian Instagram: https://www.instagram.com/jamesianmusic/

3 Joulu 201936min

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 trial on temporary hold, and some of our recent columns.

19 Marras 201927min

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 of their late son Carson.

5 Marras 201941min

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 health, winter activities and even SMA history. Feel free to join in on the conversation. Join our forums: https://smanewstoday.com/forums/register/

30 Loka 20195min

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 News Today forums. For information regarding the DEVOTE trial, please click on the following link: https://www.clinicaltrials.gov/ct2/show/NCT04089566?term=NCT04089566&rank=1 Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment.

15 Loka 201928min