Sma News & Perspectives

In episode 93, host Kevin Schaefer talks with Garrett Lerner from Los Angeles, California. Garrett is the co-creator and co-showrunner of the NBC drama series “Ordinary Joe,” and he is a father to a son with SMA type II. He talks with Kevin about the origins of the show and its disability representation, his family life, and the importance of seeing disabled characters on screen. ================================ Watch Ordinary Joe: https://www.nbc.com/ordinary-joe ================================ To learn more about Evrysdi, please visit http://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 http://www.smanewstoday.com

SMA News Today’s multimedia associate, Price Wooldridge, discusses an article on how Scholar Rock plans to initiate a Phase 3 trial of apitegromab in spinal muscular atrophy types 2 and 3 patients unable to walk by year's end. Also DeAnn Runge gives an update on the latest happenings over on the forums. Relevant topics like the vaccines, the latest cell phones and accessibility apps are being discussed as well as the new TV show Ordinary Joe. Finding caregivers, dietary issues and October being National Disability Employment Awareness Month are also at the forefront of conversation. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses a news article on how blood levels of phosphorylated neurofilament heavy chain, nerve cell damage marker, are related to greater motor gains in SMA infants, children. Also, as treatments emerge, the SMA type system is evolving. DeAnn Runge talks about what she feels are the faults with the system. She also discusses how she'd like to see it change. 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 SMA News Today article, “New Quality of Life Survey Aims to Help Inform SMA Community Needs”. Also, over on the forums there was just a conversation talking about situations that could’ve ended badly. Ari Anderson’s timely column, “Learning to Laugh and Heal After Facing Danger,” points out a lighthearted approach can be much needed after situations like these. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 92, host Kevin Schaefer talks with fellow SMA News Today contributors to discuss each other’s work experiences. October is recognized in the United States as National Disability Employment Awareness Month (NDEAM). Listen as Kevin talks with DeAnn Runge, Michael Morale, and Alyssa Silva about the nuances of working with a disability, finding jobs, and maintaining disability benefits while working. ================================ Join the conversation about NDEAM here: https://smanewstoday.com/forums/forums/topic/ndeam-what-was-your-first-job/ ================================ 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, reads an article on how pre-symptomatic infants with SMA have retained the ability to swallow after being treated with Evrysdi for at least one year in a clinical trial. Also, October is National Disability Employment Awareness Month (NDEAM.) As such it got DeAnn thinking about one of her first jobs and how she obtained it. Employment opportunities are out there and by thinking outside the box, seeking a little guidance if need be and pursuing your passions it might just be a bit easier finding suitable work. 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 Spinal Muscular Atrophy (SMA) children not helped by Zolgensma, are being enrolled in the Spinraza RESPOND trial. Plus, usually Kevin Schaefer reads his own columns, but today DeAnn Runge has the opportunity to share his latest column. Titled, “Embracing a New Chapter in Life With SMA,” Kevin writes about his longtime caregiver leaving and all the emotions surrounding it, of course putting his unique spin on it. 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 low bone density puts Spinal Muscular Atrophy (SMA) children in China at risk for fractures. Plus, DeAnn Runge talks about one of her favorite hobbies. She shares what made it possible for her to accomplish it in the first place. Because of unforeseen circumstances along with her disability progression she’s contemplating giving it up. 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 certain abilities decline in Spinal Muscular Atrophy (SMA) children who are unable to walk. In a world that can be less than accessible it’s only natural to gravitate towards something that provides some semblance of inclusion. Read by DeAnn Runge, Sherry Toh’s recent column, “The Possibility of Radical Accessibility Is Here, as Told Through Lego and Gaming,” explores this. Her experience with gaming allows her to find accessibility in unexpected places. In her words, “Accessibility is everywhere around us, even in the places we don’t think to look.” Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 91, host Kevin Schaefer talks with Blake Watson from Byram, Mississippi. Blake is a web designer and developer. He is currently a member of the frontend dev team at MRI Technologies, working on projects for NASA. He has SMA Type II and is passionate about helping disabled individuals find employment. ================================ Blake’s website: https://blakewatson.com Blake’s Twitter: @blakewatson ================================ 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 trial planned of Spinraza at high dose in Spinal Muscular Atrophy (SMA) patients who have used Evrysdi. Read the news article: https://smanewstoday.com/news-posts/2021/09/17/high-dose-spinraza-trial-sma-patients-using-evrysdi/ DeAnn Runge doesn’t shy away from personal topics especially when she feels others can relate or offer advice. One of the added challenges, when you have a disability, is dealing with your period. She talks about how she manages it, but also discusses why she’s looking for alternative options. 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 blood neurofilament light chain (NfL) levels may mark Spinal Muscular Atrophy (SMA) severity and therapy efficacy. Although she finds travel difficult for herself, DeAnn Runge loves to hear about others adventures. Today she reads Halsey Blocher’s column, “Vacationing With SMA as Your Travel Companion,” where she shares about her family trip to Florida and tips to make the journey as easy as it can be. 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 variant of an androgen receptor protein which may be useful in treating Spinal and Bulbar Muscular Atrophy (SBMA). Also, on what could possibly be the last nice day of the season, DeAnn Runge heads out on an adventure with her mom. She talks about what aspects were fun and also some challenges they faced throughout the day. 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 Cure SMA and Cytokinetics renew their joint efforts to raise funds and awareness for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reads Alyssa Silva’s latest column where she shares about a positive interaction with a child. Odds are that if you’re in a wheelchair you’ve been stared at, or even shied away from. It can be frustrating to say the least. Alyssa has a technique that engages children in conversation to foster acceptance regarding disability. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 90, host Kevin Schaefer talks with Judy Heumann, who’s originally from Brooklyn, New York. A pioneer of the disability rights movement, she is one of the primary subjects of the 2020 Netflix documentary Crip Camp. In the United States, she served in the administrations of Presidents Bill Clinton and Barack Obama. In 2020, she published her memoir Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. ================================ Judy’s book: https://www.amazon.com/Being-Heumann-Unrepentant-Disability-Activist/dp/0807019291 Judy’s Instagram: https://www.instagram.com/theheumannperspective/ ================================ 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 first-ever case in Romania of Spinal Muscular Atrophy (SMA) caused by a mutation in the ASAH1 gene. Plus, DeAnn Runge talks about a topic that’s keeping her up at night. She’s concerned she could lose 75% of her caregivers. She also shares about her next vlog regarding her views on SMA treatment effectiveness. 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, according to a mouse model, two SMN 2 targeting therapies work better than one. Also, heading into the weekend, DeAnn Runge wanted to share Brianna Albers’ latest column, “Today and Every Day, I Choose Rest.” 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 indigenous groups in Canada having the highest rate of spinal and bulbar muscular atrophy (SBMA) in the world. DeAnn Runge talks about how a recent news story regarding the Miami International Airport installing wheelchair charging stations got under her skin. She points out how difficult air travel is for the disabled community. Not only does one risk injury to themselves but also damage to their wheelchairs when they travel by plane. She feels the industry needs to address the issue of restrictive air travel. 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 mothers of Spinal Muscular Atrophy (SMA) children and adolescents what to improve their children’s quality of life. DeAnn Runge reads a column by Alyssa Silva that she relates to on many levels. It’s titled, “The Challenges of Making Friends as an Adult With SMA.” Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 89, host Kevin Schaefer talks with Carole St-Laurent from Quebec, Rimouski. Carole is the author of multiple children’s books, for which she writes under the name Rainbow Gal. She talks about her artistic career and past life as a musician, living with SMA, and her experiences with traveling and living independently. ================================ Carole’s website: http://Rainbowgal.com ================================ 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