The Spinal Muscular Atrophy Podcast with Kevin Schaefer

In this episode, host Kevin Schaefer talks with DeAnn Runge, vlogger and forum moderator for SMA News Today. DeAnn talks about acquiring her new service dog, Horton, and adapting to life with him. She also discusses testing out a JACO robotic arm, and getting a new wheelchair. Finally, Kevin and DeAnn chat about a few recent columns from our main website. ================================ To learn...

SMA News Today’s multimedia associate, Price Wooldridge, discusses 4-aminopyridine’s failure to improve muscle function in SMA Type 3 patients. DeAnn Runge talks about how her new service dog Horton is adjusting to life in Minnesota. 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 SMA Type 1 infants, treated with Zolgensma, are achieving milestones. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about a spontaneous trip he took on his 26th birthday last year, and the adventures that came from it. A variety of topics are being discussed in the forums. Among them include enjoying reading, socially distant celebrations, maskne and delayed deliveries. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com .

SMA News Today’s multimedia associate, Price Wooldridge, discusses infants who are receiving Evrysdi continue to improve and achieve motor milestones in phase 2 and 3 trial data. In light of National Disability Employment Awareness Month (NDEAM) DeAnn Runge shares her first job experiences and why it’s important to talk about this topic. Are you interested in learning more about spinal muscular at...

SMA News Today’s multimedia associate, Price Wooldridge, discusses Novartis opening, at FDA request, a new trial of Zolgensma for older patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about how SMA has affected his ability to draw, and about treasuring the little things. Recent topics being discussed in the SMA News Today forums include setting boundaries with caregivers, vlogs from DeAnn Runge & Michael Morale as well as reflecting on the changing season. To learn more about spinal muscular atrophy, visit our website at http://www.smane...

In episode 67, host Kevin Schaefer talks with Maylan Chavez from Miami, Florida. Maylan is an ambassador for the company EyeGaze Inc., which develops eye tracking technology for people with disabilities. During this interview, Maylan shares her experiences as an adult with SMA Type 2, and offers some advice for others in the community. ================================ To learn more about Evrysdi,...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza leads to motor gains over time in Spinal Muscular Atrophy (SMA) Type 3 adults, according to a real-life study. DeAnn Runge talks about meeting her new service dog and what training is like. She also discusses the different types of dog placements that were in her class. Are you interested in learning more about spinal...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the GridPad Trilogy communication device, which aids people with speech and motor disorders who have Spinal Muscular Atrophy (SMA). Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about how the past few months have been for him, and how he’s adapted to a new normal. 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 Electric Bike Technologies company donating Liberty Trikes to aid the mobility of children with Spinal Muscular Atrophy (SMA) and similar challenges. 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 AveXis, now known as Novartis Gene Therapies, focusing on continued work with genetic diseases. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer recaps his adventures during a recent eye doctor appointment, and talks about how everything takes extra effort in the world of SMA. DeAnn Runge talks about the latest SMA News Today forums topics such as getting a service dog, staying hydrated, preparing for a new wheelchair and more. To learn more about spinal muscular atrophy, visit our website at http://www.smane...

SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s National Institute for Health and Care Excellence (NICE) widening its Zolgensma appraisal due to the European marketing authorization. DeAnn Runge shares what it was like to demo a JACO Robotic Arm. 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 activities currently underway for Newborn Screening Awareness Month. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about his experiences with a BiPAP machine, and the pros and cons of wearing one. DeAnn shares Halsey’s latest column that talks about wardrobe challenges. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com .

In episode 66, hosts Kevin Schaefer and Michael Morale discuss news regarding the FDA-approved treatment Evrysdi, and Michael’s decision to switch to this therapy. They also talk about the clinical trial drug SRK-015, which is developed by Scholar Rock. Finally, Kevin reads excerpts from some of our recent columns. ================================ To learn more about Evrysdi, please visit http://w...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a nerve-muscle molecule may be an SBMA therapeutic target. DeAnn Runge talks about being overwhelmed with getting a new wheelchair, a JACO Robotic Arm and a service dog. 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 Ohio study which finds Zolgensma safe and effective, particularly in younger infants. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer compares the fictional superhero team the X-Men to the SMA community in his latest column. Recent forum topics include heading back to school even if that means homeschooling, “bad brain days” and nebulizer routines. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com .

SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA granting “Rare Pediatric Disease” designation to SRK-015 for Spinal Muscular Atrophy (SMA). DeAnn Runge talks about her process of going to the bathroom. 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 SMA registries offer “real-world experience” that makes the best treatment possible. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer provides an update on his digestive dilemma in his latest column. DeAnn Runge shares some of the final stories featured in the 31 Days of SMA campaign. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com

In episode 65, host Kevin Schaefer talks with Dwight Reed from Virginia. Dwight is a father of three, and his youngest daughter has SMA Type 1. Dwight discusses his family life, engaging with the SMA community, treatments, and more. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com .