The Spinal Muscular Atrophy Podcast with Kevin Schaefer

SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgenzma being added to the list of eligible medications for Spinal Muscular Atrophy (SMA) Type 1 patients in England and Scotland. Also, despite a global pandemic complicating the process DeAnn Runge received her new wheelchair in record time. She did have to make compromises though and talks about getting used to going from rear...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how adults with Spinal Muscular Atrophy (SMA) usually don’t experience weakness or impairment of eye muscles. Forums Director Kevin Schaefer reads a column by Ari Anderson about pursuing a team of advocates. Link to Ari’s column: https://smanewstoday.com/columns/2021/03/11/knocking-on-doors-searching-for-advocates/ Are you interest...

In episode 78, host Kevin Schaefer talks with fellow SMA News Today contributor and Senior Director Michael Morale. They discuss Michael’s decision to switch back to Spinraza, treatment updates, and other news stories. Finally, they highlight some recent columns from our main website. ================================ Links to news stories: -Cure SMA offering free virtual therapy sessions https://s...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the challenges of life as a teen and young adult with Spinal Muscular Atrophy (SMA). Also, SMA News Today content creator DeAnn Runge shares the latest column by Brianna Albers. It goes into detail on why she’s being denied treatment and her feelings regarding the process. Are you interested in learning more about spinal muscular a...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the Committee for Medicinal Products for Human Use (CHMP) approval of Evrysdi as the first oral, at-home Spinal Muscular Atrophy (SMA) treatment. DeAnn Runge talks about her hesitancy to meet with a dietician to discuss GI issues she’s been dealing with. Are you interested in learning more about spinal muscular atrophy? If so, plea...

SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi improving survival and motor development in infants with Spinal Muscular Atrophy Type 1. Forums Director Kevin Schaefer talks about managing his mental health and embracing the stillness. 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 mother who has adopted and is raising four girls from China with Spinal Muscular Atrophy (SMA). Also, a variety of topics are being talked about on the SMA News Today forums because of the diverse community that not only includes those who have SMA but parents and caregivers as well. Recent conversations include van conversions,...

SMA News Today’s multimedia associate, Price Wooldridge, discusses why brain involvement in Spinal Muscular Atrophy Type 1 is still poorly understood. Also, DeAnn Runge talks about how she’s struggling to personalize her new chair. Right now she feels like it’s just another piece of equipment, but would like ideas on how to make it more unique to her. Are you interested in learning more about spin...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the varying perspectives from parents on Spinraza therapy for their children. Forums Director Kevin Schaefer reads a column by Ari Anderson about what it means to be rare. Link to Ari’s column: https://smanewstoday.com/columns/2021/02/25/rare-diseases-flying-under-radar/ Are you interested in learning more about spinal muscular atr...

In episode 77, host Kevin Schaefer talks with Jeremy Camp from San Diego, California. Jeremy and his wife Amanda have three children, and their youngest son Asher has SMA Type 1. He talks about his family’s SMA journey, his personal life, and his mantra of surrendering to the situation. ================================ Link to Asher’s Facebook page: https://www.facebook.com/asherlennonlionsmajourn...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a new SMN-boosting molecule which shows promise as an add-on therapy for Spinal Muscular Atrophy (SMA). Also, Rare Disease Day is a day to recognize lives touched by rare diseases such as SMA. Discussions in the forums have revolved around this subject as have columns and even the latest Dose of DeAnn vlog where she interviews Dan...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a rare case of Spinal Muscular Atrophy linked with a progressive myoclonic epilepsy. Balancing mind and body can be tricky. DeAnn Runge shares her struggles with accepting her limitations as it pertains to purchasing products she can use. Are you interested in learning more about spinal muscular atrophy? If so, please visit https:/...

SMA News Today’s multimedia associate, Price Wooldridge, discusses assistive devices which should be standard in managing Spinal Muscular Atrophy (SMA) Type 1. Forums Director Kevin Schaefer talks about the close friends in his life, and how these relationships connect to his place in the rare disease community. To learn more about spinal muscular atrophy, visit our website at http://www.smanewsto...

SMA News Today’s multimedia associate, Price Wooldridge, discusses quantitative MRI imaging showing itself to be a sensitive measure of decline in young adults with Spinal Muscular Atrophy (SMA). Now that various treatments are available for SMA, it can be easy to forget that many individuals are starting treatment for the very first time. Alyssa Silva’s latest column details her feelings as other...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improves motor function in the case of a teenager with late-onset Spinal Muscular Atrophy (SMA). SMA News Today content creator DeAnn Runge shares a discussion she had regarding accessibility. Despite having come a long way where accessibility is concerned not everyone feels it’s worthwhile. Are you interested in learn...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a “miracle” when Spinraza gives a boy, now 5 years old, a chance to grow up fast and show good progress. Also, forums Director Kevin Schaefer reads a column by Ari Anderson about being a pioneer with SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 76, host Kevin Schaefer talks with fellow SMA News Today contributor DeAnn Runge. They discuss news regarding increasing the dosage of Spinraza in SMA patients, updates on Scholar Rock’s treatment, and an upcoming career webinar series from Cure SMA. Kevin and DeAnn also discuss mental and emotional health amid the pandemic, as well as access to the COVID-19 vaccine. Finally, they highl...

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 muscul...

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 distributio...

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 s...

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 exp...

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...

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’...

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 n...