The Spinal Muscular Atrophy Podcast with Kevin Schaefer

SMA News Today’s multimedia associate, Price Wooldridge, discusses the TOPAZ trial results expected in June on a muscle-directed therapy for Spinal Muscular Atrophy (SMA). Plus, staying social during a pandemic isn’t easy. Cure SMA has found a way for the SMA community to connect during these difficult times. DeAnn Runge shares her experience with one of the adult online socials hosted by Cure SMA...

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Halsey Blocher, From Where I Sit, “Advice From a Life Coach: Resolutions, Mindsets, and Emotions”. Forums Director Kevin Schaefer reads from an article on our HCP site about transitioning to a new wheelchair. 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 Team Cure SMA endurance race series moving online in the current pandemic, and expecting more people to join. Also, Vlogger and Forums Moderator, DeAnn Runge shares an overview of recent SMA News Today columns. She finds each of them relatable to her life living with SMA. Are you interested in learning more about spinal muscula...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a Spinraza Phase 4 trial to treat children who failed to respond to gene therapy. DeAnn Runge shares her experience obtaining her first dose of the Pfizer COVID vaccine. 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 strategies to keep your child with Spinal Muscular Atrophy (SMA) in school during the cold and flu season. Forums Director Kevin Schaefer reads the introductory column from our newest writer, Ari Anderson. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com .

In episode 74, host Kevin Schaefer talks with Katie Napiwocki and Andy Rusch from Mosinee, Wisconsin. Katie is a columnist for SMA News Today, and her partner Andy is also her primary caregiver. Listen to the story of how they met at MDA camp and learned about the nuances of being in an interabled relationship. ================================ Link to Katie’s column: https://smanewstoday.com/categ...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the Cure SMA three-part webinar series on wellness topics for the Spinal Muscular Atrophy community. Typically a taboo topic, sex and SMA isn’t discussed often. Forum members and columnists have stepped up to the plate to open the discussion on dating and relationships, helping break the stigma that those with disabilities aren’t s...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a higher dose Spinraza trial now enrolling Part B after no safety issues were found. Also, DeAnn Runge shares her personal experience after switching from Spinraza to Evrysdi. 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, reads the column by Brianna Albers, The Wolf Finally Frees Itself, “This Year, I Want to Be Brave”. Forums Director Kevin Schaefer talks about the challenges that come with pursuing independence and his goals for the future. 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 non-professional caregivers who care for children with Spinal Muscular Atrophy (SMA) carry a high daily burden that negatively affects their lives. As the moderators return from holiday break the most relevant topics are being discussed on the forums. Recovering from spinal fusion surgery, going to a chiropractor, setting goals...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma is linked in three cases to a serious but treatable blood disorder. 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 Zolgensma approval in Canada for the treatment of young Spinal Muscular Atrophy patients. Also, Forums Director Kevin Schaefer tells the story of a kidney stone and a trip to the ER during the holidays. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 73, host Kevin Schaefer talks with Tyler Dykema from Grand Rapids, Michigan. Tyler is an artist, musician, and punk rock connoisseur who has SMA Type II. He talks in this episode about growing up with SMA, his artistic passions, concert accessibility, and more. Happy New Year! ================================ To learn more about Evrysdi, please visit www. ApprovedForSMA.com ============...

SMA News Today’s multimedia associate, Price Wooldridge, discusses administering Spinraza (nusinersen) via a paramedian injection to shorten procedure times and reduce adverse events. SMA News Today’s forums moderator, DeAnn Runge, discusses one of the most difficult aspects of living with a disability, which is navigating the healthcare system. Brianna Albers latest column, I Can’t Get Evrysdi Ye...

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Michael Casten, “Five Servings of Strength”, Ella Has Fun While Sheltering at Home. SMA News Today’s forums moderator, DeAnn Runge, reads Alyssa Silva’s recent column, Stepping Into a New Me in the Year Ahead, where she does just that. ================================ To learn more about Evrysdi, please visit www. Approve...

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Michael Casten, “Five Servings of Strength”, Ella Has Made Big Gains Since Diagnosis Day. SMA News Today’s Columnist and Forums Director, Kevin Schaefer, Kevin Schaefer reflects on being an uncle with SMA and how this role has changed his life. ================================ To learn more about Evrysdi, please visit www...

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Brianna Albers, “The Wolf Finally Frees Itself”, Yes, Actually, Smart Tech Is Integral to My Quality of Life. SMA News Today’s forums moderator, DeAnn Runge, looks back at 2020, and shares some memorable highlights despite a pandemic throwing a wrench into everything. She encourages everyone to go after their goals and dr...

SMA News Today’s multimedia associate, Price Wooldridge, reads a column by Hasley Blocher, “From Where I Sit”, Rising From the Ashes an Flying With Broken Wings. SMA News Today’s forums moderator, DeAnn Runge shares excerpts from Katie Napiwocki's recent column, Finding My Voice within the Disability Community, where she explores the concept of disability and how it relates to her life. ==========...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the higher financial burden on Spinal Muscular Atrophy (SMA) patients, compared to other conditions. SMA News Today’s Columnist and Forums Director, Kevin Schaefer, reads from an article on our HCP site about the mental and emotional benefits of physical therapy. ================================ To learn more about Evrysdi, please...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how measuring the neurological impact of Polio proves useful in studying patients with Spinal Muscular Atrophy (SMA). SMA News Today’s forums moderator, DeAnn Runge, talks about an article that discusses the Paramedian approach for Spinraza injections. The option of Everysdi is also a hot topic. Since gatherings are out this holida...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a genetic analysis of families with a member affected by Spinal Muscular Atrophy (SMA) which finds novel mutations in SMA patients. SMA News Today’s forums moderator, DeAnn Runge shares her experiences with the lack of privacy that can be an issue when you have SMA. ================================ To learn more about Evrysdi, plea...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a study which finds Zolgensma-associated liver abnormalities are common but manageable in children with Spinal Muscular Atrophy (SMA). SMA News Today’s Columnist and Forums Director, Kevin Schaefer, reads from Brianna Albers’ column about facing disappointment during the holiday season. ================================ To learn mor...

In episode 72, Kevin Schaefer and Michael Morale reflect on the craziness of 2020, and they highlight some of the key pieces of content SMA News Today created this year. They also discuss Michael’s ongoing Evrysdi treatments, and share tips for improving one’s mental and physical health. ================================ Link to DeAnn’s videos: https://www.youtube.com/playlist?list=PLtRCVbeiSodnTNo...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a Neurological Alliance report calling for better treatment and care of U.K. patients living with rare neurological conditions such as Spinal Muscular Atrophy (SMA). SMA News Today’s forums moderator, DeAnn Runge discusses an article written by Alyssa Silva. She talks about how Alyssa had doubts about her ability to start a small b...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza is linked to temporary abornalities in immune cells in two Spinal Muscular Atrophy (SMA) infants. SMA News Today’s forums moderator, DeAnn Runge talks about how the process is going adjusting to her new wheelchair. ================================ To learn more about Evrysdi, please visit www. ApprovedForSMA.com ======...