Sma News & Perspectives

SMA News Today’s multimedia associate, Price Wooldridge, discusses the EMBRACE Trial which supports Spinraza’s benefits in a broad range of Spinal Muscular Atrophy (SMA) patients. Also, DeAnn Runge welcomes new SMA News Today columnist, Sherry Toh, by reading her debut article, "Welcome to ‘Wandering the Lines,’ Our Journey Into the Unknown". 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 National Organization for Rare Disorders (NORD) 6th “state report card”, noting progress, but raising concerns. Plus, closing in on a year after the global pandemic emerged DeAnn Runge shares her thoughts on receiving one of the first vaccines available. She also points out seeing societies inequities during vaccine distribution. 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 rare disease groups and pharmaceutical companies, joining SMA Europe in a push for newborn screening for Spinal Muscular Atrophy (SMA). Forums Director Kevin Schaefer shares his thoughts on “Disability Visibility,” a collection of first-person essays from a wide range of disabled authors. 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 improvement in motor function, breathing, and ease of administration are important factors when Spinal Muscular Atrophy (SMA) patients and caregivers decide on treatment options. Plus, recent conversations in the SMA News Today forums include the efficacy of the new vaccines in combination with some SMA treatments. Also what to expect when starting Evrysdi and managing any side effects. Recent podcasts and columns are being talked about as well. 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 more severe COVID-19 symptoms being seen in children with Spinal Muscular Atrophy (SMA) Type 1. Also, vlogger and forums moderator DeAnn Runge talks about her upcoming Dose of DeAnn vlog where she ventures out of what she refers to as hibernation. She shares where she went and why she decided to go as well as encourages viewers to surround themselves with what makes them happy. 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 better ways of capturing progression of motor abilities in Spinal Muscular Atrophy (SMA) Types 2 and 3. Forums Director Kevin Schaefer talks about the struggles of being a disabled extrovert during a pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 75, host Kevin Schaefer talks with Alvaro Cheherlian from Sylmar, California. Alvaro is the founder and CEO of Wrekt Svpply, a clothing brand company. He talks about building his business, growing up with SMA Type 2, and his love for coffee and heavy metal. Also, Kevin and Alvaro take some time to geek out on movies and Marvel television. ================================ Link to Alvaro’s Instagram: https://www.instagram.com/_hotwheelz/ ================================ Wrekt Svpply Website: https://www.wrektsvpply.com/ ================================ Alvaro’s YouTube Channel: https://www.youtube.com/channel/UCcWgwtuV4piFFO2wAi5anUA ================================ 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.sma

SMA News Today’s multimedia associate, Price Wooldridge, discusses a Cure SMA booklet which outlines the possible risks and benefits of combining treatments for Spinal Muscular Atrophy (SMA). Also, several topics are being hashed over on the forums. Among them include breaking in a new wheelchair, frustrations with bureaucratic red tape, reflecting on being homebound for the last year, finding a new PCP and of course the ever popular topic of 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, 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. 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 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 muscular atrophy? If so, please visit https://smanewstoday.com/

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.

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 sexual beings. 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 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 for the New Year, dating as well as life hacks are all among what is being talked about. 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 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 ================================ 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