SMA News & Perspectives

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...

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...

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 he...

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 col...

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 interest...

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...

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 tre...

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. =================...

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 disc...

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...

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 neede...

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 whil...

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 opport...

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...

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 givin...

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, a...

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 Twitt...

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 a...

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 h...

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 y...

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 fr...

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...

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...

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. N...