Sma News & Perspectives

SMA News Today’s multimedia associate, Price Wooldridge, discusses how The National Institute for Health and Care Excellence has recommended that Evrysdi be provided at low or no cost to eligible SMA patients in England. Also, the process of modifying a wheelchair for specific needs is no easy task. DeAnn Runge shares how difficult it’s been for her simply to receive comfortable arm rest pads. Even after replacing them, they’re not what she hoped for. She’s now contemplating what her next action should 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 how Spinraza improved fine manual dexterity in both hands of five children with SMA type 2 over 1.5 years of treatment, a case series shows. As the new year gets underway it’s a great time to hear what motivates people. In Ari Anderson’s recent column, “The Blessings That Spark My Ambitions for the New Year,” he talks about an opportunity that fell into place and how he’s using that to propel future achievements. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 97, host Kevin Schaefer talks with Ali Ramos (she/her) from Amarillo, Texas. Ali is a licensed social worker and activist, focusing on both the disability and LGBTQ communities. She talks with Kevin about living with SMA, pursuing independence, and her advocacy work. ================================ Ali’s Instagram: https://www.instagram.com/kittylegs/ Ali’s Facebook page: https://www.facebook.com/aliramostherapy/ ================================ 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, reads a news article on how the delays in Spinraza treatment due to the COVID-19 pandemic did not directly result in worsening symptoms in children, a study in Italy says. Also, after reflecting on 2021, DeAnn shares what her plans are for 2022. Although she doesn’t make resolutions, she’s made goals and explains what they mean to her. 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 a study showed for the first time that genetic analysis of dried saliva spots correctly identified people with spinal muscular atrophy. Also, when you have SMA there are additional aspects to consider when doing things like moving into a new house. Halsey Blocher references some of these challenges in her article, “Giving Thanks for Our New Home.” She talks about how they’ve made the transition easier and steps she’s taken to make her new space feel like home. 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 not having Spinraza therapy as prescribed – called treatment non-adherence – increases overall costs and healthcare use for SMA patients. Also, DeAnn Runge shares why December is a bittersweet time of the year. Despite that she’s looking forward to the upcoming year. 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 delays of Spinraza treatment due to COVID-19 seem to affect children's function less than weaker family support, small study found. Plus, togetherness is something Alyssa Silva looks forward to during the holiday season. In her latest SMA News Today column, “Cherishing Togetherness During the Holidays,” she shares some of their family holiday traditions as well as points out why she cherishes them. 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 Scholar Rock plans to initiate a pivotal trial of its muscle-targeted therapy in non-ambulatory spinal muscular atrophy patients in 2021. Technology is something DeAnn relies on to live independently. When it isn’t functioning properly it can be a hassle. DeAnn talks about issues she’s having with her internet and what she must do to make it 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 an article about how blood levels of neurofilaments and the results of a nerve-muscle test may be biomarkers for SMA onset/severity and treatment response. Also, Sherry Toh’s SMA News Today article, “As an Adult With SMA, I Need Access to Evrysdi, Too,” pulls at your heartstrings. DeAnn can relate to those feelings as it reminds her of when she was trying to access Spinraza. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In this episode, host Kevin Schaefer talks with Halsey Blocher and Heather Dye from Fort Wayne, Indiana. Halsey is a columnist for SMA News Today, and her mother Heather is a caregiver and advocate. During this conversation, they talk about the nuances of living with SMA, transitioning to adulthood, and advice they have for others in the SMA community. ================================ Halsey’s column: https://smanewstoday.com/from-where-i-sit-halsey-blocher/ Heather’s 31 Days of SMA story: https://smanewstoday.com/31-days-of-sma/2020/08/14/31-days-of-sma-heather-halsey-dye/ ================================ 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 Novartis Pharmaceuticals Canada applauds the province of Quebec for its move to offer public reimbursement for the SMA gene therapy Zolgensma. Also, making meaningful connections has become difficult for DeAnn Runge over the past several years. She explains why that is and shares some of her recent experiences. 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 the U.S. FDA has added acute liver failure to the list of concerns with use of Zolgensma in children with spinal muscular atrophy. Plus, the value of time can be a difficult concept to master. In Ari Anderson’s recent article, “Time Is a Balancing Act, Let’s Learn How to Do It Together,” he talks about the value of time and how he prioritizes his precious time. 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 better/stable motor function and breathing, along with oral use, is ranked high in a UK survey of SMA type 2 and 3 adult patients, caregivers. Plus, after completing her annual neurology visit and assessments DeAnn talks about why no change is a good thing where SMA is concerned. She gives an update on where she’s at in her treatment journey and talks about her plan going forward. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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/