The Spinal Muscular Atrophy Podcast with Kevin Schaefer

SMA News Today’s multimedia associate, Price Wooldridge, discusses disparities found in parents and children’s perceptions of Spinal Muscular Atrophy. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about how having SMA has led to many positive interactions with strangers. On the forums this week returning to school is a topic of discussion as well as summer playlists and the latest column by Brianna Albers. Are you interested in learning more about spinal muscular atrophy? If so, please visit http://smanewstoday.com/

In episode 61, the SMA News Today team shares some highlights from the 2020 virtual Cure SMA conference. They discuss webinar presentations, research updates, and virtual social events which they participated in. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com

SMA News Today’s multimedia associate, Price Wooldridge, discusses a motor function improvement after one year of Spinraza in children with SMA Types 1-2. DeAnn Runge talks about the importance of embracing your differences and what made that easier for her. 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 a systemic treatment that may be more effective for Spinal Muscular Atrophy. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer reflects on the life of his service dog Pandy, who recently passed away. Recent topics of discussion on the forums include switching treatments, summer reading and dealing with health issues on top of SMA. 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 how Risdiplam continues to show promise for treating SMA. Forums moderator DeAnn Runge shares her attempt to pull off a surprise. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about the upcoming initiative 31 Days of SMA, which is a collection of stories from people in the SMA community. SMA News Today’s multimedia associate, Price Wooldridge, discusses how 96% of children given Spinraza as newborns are able to walk according to the NUTURE trial. Are you interested in learning more about spinal muscular atrophy? If so, please visit h...

Forums Director Kevin Schaefer reads from Brianna Albers’ latest column, which highlights the new patient initiative SMA My Way. Forums moderator DeAnn Runge discusses her colleague’s connection to the new platform SMA My Way. She goes on to talk about what’s being binge watched on Netflix and also what you can find on the smanewstoday.com website. Are you interested in learning more about spinal...

SMA News Today’s multimedia associate, Price Wooldridge, discusses interviews that probe how unaffected siblings learn the genetic implications of Spinal Muscular Atrophy. Forums moderator DeAnn Runge talks about how despite having her opinion be dismissed due to her disability her viewpoint still counts. Are you interested in learning more about spinal muscular atrophy? If so, please visit https:...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how too little is known about the care needs of adults with Spinal Muscular Atrophy. Forums Director Kevin Schaefer talks about the 2019 memoir “The Pretty One,” written by disability advocate Keah Brown. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about taking part in the first virtual Cure SMA conference. This week’s forum topics include DeAnn’s latest vlog regarding creating a sanctuary, scoliosis as an adult as well as epic wheelchair stories. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

In episode 60, host Kevin Schaefer interviews George Corbin from Neptune, New Jersey. George is a graduate of Temple University, and he has SMA type 3. He currently works as a mortgage loan officer. During this discussion, George talks about growing up with SMA, his mindset of perseverance, and his real estate career. To learn more about spinal muscular atrophy, visit our website at www.smanewstod...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how heart problems in SMA may be tied to calcium dysregulation. Forums moderator DeAnn Runge shares her thoughts on why reflecting on life a year ago should evoke happiness and joy rather than sadness. 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 SHINE study data showing Spinraza has sustained efficacy. In Brianna Albers’ latest column, she calls for more black representation in the disability community. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about celebrating six years with his caregiver Randy. With the Cure SMA Conference going virtual this year it’s led to many topics of conversation on the forums. In other discussions efforts to be inclusive regarding diversity in the SMA community have been brought up. Michael Morale’s latest video regarding tips on wheelchair selection has been released as wel...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how feeding issues still are common among SMA Type 1 infants, despite new therapy options. As salons open up forums moderator talks about how she decided to risk it for a haircut. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s, Senior Director of Multichannel Content, Michael Morale, discusses a real-world study that shows that Spinraza meets most therapeutic expectations of adult SMA patients. Forums Director Kevin Schaefer shares the story of the first trip he took with his caregiver Randy a few years ago. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://s...

In episode 59, host Kevin Schaefer talks with our very own columnist Brianna Albers. Brianna talks about quarantine, values-based living, and how she's keeping herself occupied during the COVID-19 pandemic. It's easy to wonder how long the pandemic will last and to dream about life returning to normal, but Brianna encourages listeners to facilitate contentment in the present. To keep herself engag...

Forums Director Kevin Schaefer shares some tips for staying active and mentally engaged this summer, while still remaining in self-isolation. A hot topic on the forums is how the JACO Robotic Arm opens doors both literally and figuratively. Also being discussed are comfort levels with resuming activities as the world opens up as well as altering summer plans, like taking SMA conference virtual. Ar...

Since 2016 several treatment options for SMA have become available. Forums moderator DeAnn Runge discusses these options. SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study finds respiratory weakness in SMA is most pronounced in childhood. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about how video games can benefit rare disease patients in hospitals right now, including those with neuromuscular conditions like SMA. SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA treatment and screening programs “essential” in the Covid-19 pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visi...

Forums Director Kevin Schaefer talks about the investigational therapy risdiplam, and whether or not he would consider switching treatments. Masks are a hot topic on the forums. With finding it difficult to breathe through them and some experiencing negative effects from wearing them, forum members are seeking alternatives. Other topics being discussed are questions posed during a courageous conve...

Despite not being able to shop in person, DeAnn Runge finds a way to replace her television that decided to quit working at the most inopportune time. SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study addresses dilemmas regarding newborn screening and SMA treatment. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewsto...

Forums Director Kevin Schaefer reads the latest post from caregiver columnist Michael Casten. SMA News Today’s multimedia associate, Price Wooldridge, discusses a family and doctor “partnership” that led to a baby’s Spinraza treatment. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/