The Spinal Muscular Atrophy Podcast with Kevin Schaefer

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 y...

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 Thank...

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 atr...

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...

SMA News Today’s multimedia associate, Price Wooldridge discusses how a recent study found that Tranexamic acid effectively reduced blood loss by over 50% during surgery to correct scoliosis due to spinal muscular atrophy. Also, we all know that self-reflection can be challenging. In Brianna Albers' latest article, she reflects on a reality that requires her to make a change. DeAnn Runge discusses...

In episode 95, host Kevin Schaefer talks with the creators of the new song “Spaces.” Done in collaboration with Genentech, this production was created entirely by people from the SMA community. James Ian is a singer, songwriter, and actor from Los Angeles, California. With Spaces, he wanted to create a song specifically for the disability community. Dominick Evans is a trans, non-binary creator or...

SMA News Today’s multimedia associate Price Wooldridge, discusses an article on how spinal deformities and weak trunk muscles put substantial limits on the functional abilities of SMA children and need to be addressed. Plus, DeAnn Runge knows all too well the downside of the internet. After all her Facebook account was just hijacked. That’s why she wants to share Kevin Schaefer’s recent article "T...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Roche and Genentech will initiate a Phase 2/3 clinical trial to evaluate the safety and efficacy of GYM329 in combination with Evrysdi in children with SMA. Also, after thinking this Thanksgiving would resemble some normalcy, Covid throws a wrench into DeAnn’s family plans. She explains why their plans have changed and her feel...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how All Wheels Up recently celebrated the release of a transportation review board study that showed the feasibility of accessible aircraft. Also, nothing’s ever easy, or so it seems for DeAnn Runge. She talks about the process to get a back door opener replaced and the challenges she faces while waiting for it. Are you interested...

SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how administering Spinraza by subcutaneous intrathecal catheter improved upper limb function in some spinal muscular atrophy patients. Plus, there are differing opinions on how to refer to a person with a disability. Halsey Blocher's recent column discusses this topic and talks about how there's not one right answe...

In episode 94, host Kevin Schaefer talks with Pamela K. Muhammad from Monroe, Louisiana. Pamela is the author of two books, and she is currently in the process of launching her own fashion accessory business. She talks about living independently with SMA, combatting disability stereotypes, and shares advice for others in the community. ================================ Pamela’s poetry book: https:/...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study in China suggests a high prevalence of anxiety and depression among school-age children and adolescents with spinal muscular atrophy. Also, DeAnn Runge shares the topic of her recent vlog. She talks about the feelings associated with losing abilities and describes how she overcame the obstacles that threatened her hobby...

SMA News Today’s multimedia associate, Price Wooldridge discusses how a pilot of newborn screening for spinal muscular atrophy in Liege province became in 3 years a government-run program for Southern Belgium. Also, Katie Napiwocki's columns always have DeAnn reflecting on her own SMA journey. Today she reads the article, "The Asymmetries of a Physical Therapy Routine and a Koala’s Conquest," wher...

SMA News Today’s multimedia associate, Price Wooldridge, shares the story of Ben Lou, an 18-year-old with SMA type 2, mentally as strong as they come: accepted to three top US universities, and that is now attending MIT. Plus, DeAnn talks about making her world more accessible even if that means inconveniencing others. Giving some examples she demonstrates the conflicting feelings she faces. Are y...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how in an open letter to a U.S. Department of Transportation Advisory Committee, Cure SMA called for better wheelchair storage for air travel. Plus, Alyssa Silva's recent column hits close to home for DeAnn. She shares her article that talks about how overwhelming SMA medical issues can be and encourages listeners to continue the d...

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 about how a Canadian agency found evidence lacking to support gene therapy reimbursement in older babies and toddlers with spinal muscular atrophy. Plus, DeAnn Runge talks about how sometimes being inundated with all things SMA gets to be too much for her. Today she's talking about a topic totally unrelated to SMA to tak...

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...