#16 - Interview With Brian Ronningen

SMA News Today’s multimedia associate, Price Wooldridge, reads the SMA News Today article, “New Quality of Life Survey Aims to Help Inform SMA Community Needs”. Also, over on the forums there was just a conversation talking about situations that could’ve ended badly. Ari Anderson’s timely column, “Learning to Laugh and Heal After Facing Danger,” points out a lighthearted approach can be much needed after situations like these. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

21 Okt 20218min

In episode 92, host Kevin Schaefer talks with fellow SMA News Today contributors to discuss each other’s work experiences. October is recognized in the United States as National Disability Employment Awareness Month (NDEAM). Listen as Kevin talks with DeAnn Runge, Michael Morale, and Alyssa Silva about the nuances of working with a disability, finding jobs, and maintaining disability benefits while working. ================================ Join the conversation about NDEAM here: https://smanewstoday.com/forums/forums/topic/ndeam-what-was-your-first-job/ ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

19 Okt 202147min

SMA News Today’s multimedia associate, Price Wooldridge, reads an article on how pre-symptomatic infants with SMA have retained the ability to swallow after being treated with Evrysdi for at least one year in a clinical trial. Also, October is National Disability Employment Awareness Month (NDEAM.) As such it got DeAnn thinking about one of her first jobs and how she obtained it. Employment opportunities are out there and by thinking outside the box, seeking a little guidance if need be and pursuing your passions it might just be a bit easier finding suitable work. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

18 Okt 20216min

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) children not helped by Zolgensma, are being enrolled in the Spinraza RESPOND trial. Plus, usually Kevin Schaefer reads his own columns, but today DeAnn Runge has the opportunity to share his latest column. Titled, “Embracing a New Chapter in Life With SMA,” Kevin writes about his longtime caregiver leaving and all the emotions surrounding it, of course putting his unique spin on it. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

14 Okt 202110min

SMA News Today’s multimedia associate, Price Wooldridge, discusses how low bone density puts Spinal Muscular Atrophy (SMA) children in China at risk for fractures. Plus, DeAnn Runge talks about one of her favorite hobbies. She shares what made it possible for her to accomplish it in the first place. Because of unforeseen circumstances along with her disability progression she’s contemplating giving it up. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

11 Okt 202110min

SMA News Today’s multimedia associate, Price Wooldridge, discusses how certain abilities decline in Spinal Muscular Atrophy (SMA) children who are unable to walk. In a world that can be less than accessible it’s only natural to gravitate towards something that provides some semblance of inclusion. Read by DeAnn Runge, Sherry Toh’s recent column, “The Possibility of Radical Accessibility Is Here, as Told Through Lego and Gaming,” explores this. Her experience with gaming allows her to find accessibility in unexpected places. In her words, “Accessibility is everywhere around us, even in the places we don’t think to look.” Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

7 Okt 202114min

In episode 91, host Kevin Schaefer talks with Blake Watson from Byram, Mississippi. Blake is a web designer and developer. He is currently a member of the frontend dev team at MRI Technologies, working on projects for NASA. He has SMA Type II and is passionate about helping disabled individuals find employment. ================================ Blake’s website: https://blakewatson.com Blake’s Twitter: @blakewatson ================================ To learn more about Evrysdi, please visit www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit www.smanewstoday.com

5 Okt 202141min

SMA News Today’s multimedia associate, Price Wooldridge, discusses a trial planned of Spinraza at high dose in Spinal Muscular Atrophy (SMA) patients who have used Evrysdi. Read the news article: https://smanewstoday.com/news-posts/2021/09/17/high-dose-spinraza-trial-sma-patients-using-evrysdi/ DeAnn Runge doesn’t shy away from personal topics especially when she feels others can relate or offer advice. One of the added challenges, when you have a disability, is dealing with your period. She talks about how she manages it, but also discusses why she’s looking for alternative options. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

4 Okt 20218min