The Spinal Muscular Atrophy Podcast with Kevin Schaefer

SMA News Today’s multimedia associate, Price Wooldridge, discusses the likely next focus of muscle and combo therapies for Spinal Muscular Atrophy (SMA). DeAnn Runge shares her thoughts on her 3 year journey with Spinraza. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses the SMA debate: might systemic treatment be best? Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer reads from a recent 31 Days of SMA story. Contributor Andres Gonzalez focuses on the topic of resilience and SMA. DeAnn Runge summarizes a handful of stories featured in the 31 Days of SMA campaign as well as touches on other interesting forum topics being discussed. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com .

SMA News Today’s multimedia associate, Price Wooldridge, discusses the story from a 61 year old with SMA Type 3, who says, with Evrysdi, “every day is good”. DeAnn Runge talks about putting together a hospital bag to make hospital stays more comfortable. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In this episode, members of the SMA News Today team discuss assistive technologies that have had a unique impact on their lives. These technologies include electric wheelchairs, Amazon Echo devices, the JACO robotic arm, adaptive vehicles, and more. ================================= To learn more about Evrysdi, please visit http://www. ApprovedForSMA.com

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi and Spinraza target the SMN2 gene, but in different ways. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about the joy of always learning in his latest column. On the forums Evrysdi (risdiplam) is still a hot topic. Also, two of the featured 31 Days of SMA have different perspectives on education. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses the expertise in RNA biology at the core of PTC’s formative work with Evrysdi. DeAnn Runge talks about the considerations of switching from Spinraza to Evrysdi and how she came to her decision. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi has parents “totally optimistic” for the future of their boy with SMA Type 2. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses frequently asked questions about Evrysdi (Risdiplam). Patients needing information can also go online at Evrysdi.com , or call 1-833-EVRYSDI (833-387-9734). The forums are buzzing with the announcement Evrysdi has been approved for the treatment of SMA. Many great stories have also been shared this week during the 31 Days of SMA. A...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA approval of risdiplam, now known as Evrysdi, as the first oral treatment for all SMA types. This flash briefing is a summary of the article that was written by SMA News Today. To read the article in its entirety, please click on the following link: https://smanewstoday.com/2020/08/07/fda-approves-evrysdi-risdiplam-first-ora...

SMA News Today’s multimedia associate, Price Wooldridge, discusses plans being advanced for a biomarkers panel to assess drug-induced skeletal muscle injury in SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 63, host Kevin Schaefer talks with Hugo Trevino from Chicago, Illinois. Hugo is a disability advocate and an academic advisor for students with disabilities at the University of Illinois in Chicago, and he has SMA Type 3. Kevin and Hugo talk about advocacy, school experiences, ableism and more. Also, hear the story of how Hugo and his sister had to fight for a ramp so they could get on...

Forums Director Kevin Schaefer reads from one of the stories from our 31 Days of SMA initiative. This story focuses on dating and disability. Also, DeAnn Runge gives an overview of the first few days of the 31 Days of SMA initiative. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses the greatest loss of motor skills at ages 5 to 13 in SMA Type 2 patients. Now that DeAnn Runge had her wheelchair evaluation she has to decide what wheelchair will best suit her needs. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses the news Biogen is planning to launch a first trial, testing Spinraza in children previously given Zolgensma. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about taking on extra responsibilities while his Mom recovers from surgery. Welcome to all of the new forum members. This week on the forums some of the topics being discussed include thinking ahead, disability vs. disease and diverse reading selections. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses the news that Iowa adds SMA as a pilot program for newborn screening. With so much going on in the world DeAnn’s welcomed distraction comes in the form of a kitten. She shares how it came into her life at the most appropriate time. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanew...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza eases fatigue in adults with SMA, but that benefit wanes. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about socially distanced visits with friends and 31 Days of SMA. DeAnn Runge also talks about socially distant visits, reintroducing PCA’s and disability pride month. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com .

In episode 62, host Kevin Schaefer talks with Shawn Stewart from southern California. Shawn has his own tax service business, and he has SMA Type 3. He discusses growing up with a disability, adult life, and getting married in 2019. Listen here! To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com .

SMA News Today’s multimedia associate, Price Wooldridge, discusses how SMN protein levels in blood, may mark SMA severity and help guide treatment. For SMA News Today forums moderator DeAnn Runge, Disability Pride month is a time to own your disability and live life to the fullest. She reads an article by Katie Napiwocki which is a prime example of doing just that. Are you interested in learning m...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how new Glia cell markers may provide insight into neuromuscular diseases, including SMA and ALS. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about embracing Disability Pride Month. Summer is well under way and ways to beat the summer heat is a topic of discussion on the SMA forums. Travel and equipment rental is also something being talked about. Are you interested in learning more about spinal muscular atrophy? If so, please visit http://www.smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses the significant limits to treatment seen for a Spinal Muscular Atrophy, Type 0, baby. Despite feeling discontent DeAnn shares how she tries to look past what she can't do, focus on what she can and learns to be content with where she’s at. Are you interested in learning more about spinal muscular atrophy? If so, please visit https:...