SMA News & Perspectives

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...

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.

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

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.

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

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...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study finds respiratory weakness in SMA is most pronounced in childhood. Since 2016 several treatment options for SMA have become available. Forums moderator DeAnn Runge discusses these options. 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/

Forums Director Kevin Schaefer talks about the fatigue he experiences prior to a Spinraza injection. DeAnn’s latest vlog has been posted where she shows what’s included in the Cure SMA COVID-19 care package. Both Katie Napiwocki and Alyssa Silva have columns being discussed in the forums and the latest roundtable talking about Spinraza during the coronavirus is available for listening. Are you int...

In episode 58, the SMA News Today team talks about how the COVID-19 pandemic is impacting their Spinraza appointments and other medical procedures. Hosts Kevin Schaefer and Michael Morale, and forum moderators DeAnn Runge and Alyssa Silva, each share their personal experiences regarding this subject. They also discuss how telemedicine could potentially become the new normal for rare disease patien...

Forums moderator DeAnn Runge shares how she’s navigating the current world situation and how resuming operations in the next phase poses new challenges and concerns. SMA News Today’s multimedia associate, Price Wooldridge, discusses how lung ultrasound is a reliable option to chest X-rays for monitoring children. Are you interested in learning more about spinal muscular atrophy? If so, please visi...

Forums Director Kevin Schaefer reads from Brianna Albers’ latest column “How Do We Maintain Post-traumatic Growth?” SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study suggests the interplay of motor neurons and Glial cells is at the root of Spinal Muscular Atrophy. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoda...

In the forums Michael Morale’s latest video, which points out the differences between risdiplam and SRK-015 as potential SMA treatments, has been a topic of conversation. Brianna Albers' series on dealing with anxiety that comes along with the coronavirus has been a popular topic as well as discussions about what “able-bodied” people take for granted, liquid albuterol and disabled authors. Forums...