Sma News & Perspectives

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 holiday, one post suggests group streaming holiday movies. It may be unconventional, but is a way to bring togetherness during the holidays. ================================ 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

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, 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

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 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

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=PLtRCVbeiSodnTNonRZjqAunFtBXiFxVPi Podcast with LaMondre Pough: https://soundcloud.com/sma-news-today/69-interview-with-lamondre-pough Brianna Albers’ column: https://smanewstoday.com/columns/2020/07/27/disability-pride-month-ada-committed-change/ ================================ 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

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 business, but she tackled it disregarding the challenges SMA brought to the table. ================================ 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

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 ================================ 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

SMA News Today’s multimedia associate, Price Wooldridge, discusses how extensive trial monitoring confirms Evrysdi does not damage vision in children or adults with Spinal Muscular Atrophy (SMA). SMA News Today’s Forums Director, Kevin Schaefer, talks about how the series “Boy Meets World” impacted him, and the correlation between creativity and SMA. ================================ 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

SMA News Today’s multimedia associate, Price Wooldridge, discusses how olesoxime failed to benefit Spinal Muscular Atrophy (SMA) Type 2 and 3 patients in a final trial. SMA News Today’s forums moderator, DeAnn Runge discusses recent topics in the SMA News Today forums. A big topic of course is COVID. From dealing with the effects to anticipating the vaccine many discussions revolve around it. In other news Michael Morale’s latest YouTube video has been posted regarding the steps he took to get the latest FDA approved treatment Everysdi. Other conversations in our forums include relieving neck tension, disease progression, switches and favorite assistive technology. ================================ 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

SMA News Today’s multimedia associate, Price Wooldridge, discusses how gene therapy, given directly to the spinal canal, might be safer with a “silencing” step. SMA News Today’s forums moderator, DeAnn Runge talks about everything shes had to get caught up with after quarantine. ================================ 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

Forums Director Kevin Schaefer explores the intersection of identity and SMA in his latest column. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.

In episode 71, host Kevin Schaefer talks with Kristen Resendez from Harlingen, Texas. Kristen’s son, Jack, has SMA, and she is an active member of the SMA community. During this conversation, she talks about life since Jack’s diagnosis, medical advancements, and advice for other parents. ================================ To learn more about Evrysdi, please visit 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

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study has shown Spinraza preserves respiratory muscle strength in Spinal Muscular Atrophy (SMA) Type 2 patients. 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 lung health declines in step with motor loss in Spinal Muscular Atrophy (SMA) Types 2 and 3. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer reflects on the insanity of 2020, and talks about the people who got him through this year. 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 mild, transient benefits of Spinraza treatment in an infant with severe, Type 0, Spinal Muscular Atrophy (SMA). 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 molecule similar to Evrysdi, is possibly safer at higher doses has been identified. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about how a recent urology appointment turned into a bit of a fiasco. He describes this as an “SMA kind of day.” Also, SMA News Today not only brings you the latest news as it relates to SMA, they also have great content in regards to living with it. DeAnn Runge gives a brief synopsis of Katie Napiwocki’s latest column as well as highlights recent forum topics like easier typing strategies, vitamin D and Friendsgiving. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.

In episode 70, host Kevin Schaefer and Michael Morale talk with entrepreneur Ron Borgschulte. Ron is the owner of Partners in Medicine, a company that works with Kinova Robotics to distribute assistive technologies to people in the United States. Since working with Kinova, Ron has played an important role in helping clients acquire devices like the JACO robotic arm. He talks about his experiences with the SMA community and answers questions about the JACO arm. ================================ 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

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a muscle MRI captures Spinraza’s effects on tissue fibers in two brothers with Type 3 Spinal Muscular Atrophy (SMA). DeAnn Runge talks about the frustrations that come along with adjusting 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 England’s National Institute for Health and Care Excellence (NICE) review of reimbursement for SMA Type 3 patients who are unable to walk. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/