SMA News & Perspectives

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 atroph...

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.c...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how $1 million has been raised by a Spinal Muscular Atrophy (SMA) patient for a disabled gamers project. Also, DeAnn Runge talks about her latest Dose of DeAnn vlog where she reveals her Jaco Robotic Arm. She shows you what the installation process is like, and what she can do with it. Are you interested in learning more about spin...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how some Spinal Muscular Atrophy (SMA) patients unable to walk unassisted may have trouble chewing. And to close out SMA Awareness Month, DeAnn Runge shares the final few stories from the 31 Days of SMA campaign. She goes on to remind everyone that just because the month is over it doesn’t mean SMA goes away. Continue sharing stori...

#InstagramLive​ here: https://www.instagram.com/tv/CTBDgwbBFm5/ Ally Macgregor chats with Kevin Schaefer (@kevinschaefer19), Katie Napiwocki (@wheelprintsalongthewildflowers) and Samantha Przybylski (@smasammysue) about the 31 Days of SMA campaign, personal storytelling and disability advocacy. You can watch this conversation again, here. Also, don't forget to check us out and follow us on social...

SMA News Today’s multimedia associate, Price Wooldridge, discusses an SMA UK network which helps patients navigate adulthood, living longer, attending college, pursuing careers, and traveling more. Also, having what she considers a significant disability DeAnn Runge finds life in general can be little daunting. That's why she goes by her motto, focus on what you can do not on what you can't. She e...

SMA News Today’s multimedia associate, Price Wooldridge, discusses newborn screening for Spinal Muscular Atrophy (SMA) in Japan and it’s support by most parents surveyed. Plus, not only does the 31 Days of SMA campaign highlight some amazing people, it also sheds light on what needs to change in our communities. Acceptance, attitude and overcoming obstacles are also themes that run throughout the...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) Type 1 affects sensory nerves as children age. Plus, Kevin Schaefer reads a column by Ari Anderson about being thankful instead of being envious. Link to Ari’s column: https://smanewstoday.com/columns/2021/08/19/learning-be-thankful-instead-envious/ To learn more about spinal muscular atrophy, visi...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the best possible outcome for infants with Spinal Muscular Atrophy (SMA) is newborn screening, then Zolgensma, according to a cost-effectiveness study in Australia Also, content creator DeAnn Runge talks about getting her Jaco Robotic arm. She shares her concerns and the adjustments she’s had to make after receiving it. Despite tha...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how the gene therapy Zolgensma helps improve mobility in young children with Spinal Muscular Atrophy (SMA) in a real-world study. Also, as August is beyond half over several stories have been featured in the 31 Days of SMA campaign. Here are a handful of the most recent ones. Are you interested in learning more about spinal muscula...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA lifting its partial hold on clinical trials of Intrathecal OAV-101 for the treatment of Spinal Muscular Atrophy (SMA). Also, forums Director Kevin Schaefer reads a story from our 31 Days of SMA series. This piece, written by Tristram Peters, is about self-acceptance and rejecting ableism. Link to 31 Days of SMA series: http...

In episode 88, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and Katie Napiwocki. They discuss this year’s 31 Days of SMA campaign, as well as other topics and news stories related to SMA Awareness Month. Finally, they highlight some recent columns from our main website. ================================ Links to 31 Days of SMA campaign and news stories: - 31 Days...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how the Zolgensma-Evrysdi combination is likely beneficial for patients with Spinal Muscular Atrophy (SMA) Type 1. Also, DeAnn Runge shares about the stress and anxiety that come along with verifying disability eligibility. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.c...

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Katie Napiwocki, A Wildflower in the Wheelderness, “Inviting People to Sit at the Table of My Disabled Life”. Also, as the 31 Days of SMA continues SMA News Today has featured some fabulous stories with more to come. DeAnn shares a brief synopsis of some of the most recent featured contributions. Are you interested in lea...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the award of funds by Muscular Dystrophy Canada for Spinal Muscular Atrophy (SMA) newborn screening. Also, Kevin Schaefer reads a column about the concept of SMA Pride and disability language. 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 improved lung function with Spinraza in a Spinal Muscular Atrophy (SMA) Type 2 child. Also, As DeAnn Runge awaits the arrival of her Jaco Robotic Arm she’s doing some last minute cleaning. She even found a way to personalize her chair. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://sm...

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup at a Time, “Why My Journey With Disability Pride Isn’t Linear”. Also, in recognition of SMA Awareness Month, SMA News Today features the wonderful initiative called 31 Days of SMA. Each day in August a story is featured of someone whose life has been touched by SMA. DeAnn Runge gives a brief sy...

SMA News Today’s multimedia associate, Price Wooldridge, discusses Novartis stopping work on the development of Branaplam as an oral treatment for Spinal Muscular Atrophy (SMA). Forums Director Kevin Schaefer reads a story from our 31 Days of SMA series. This piece, written by Alvaro Cheherlian, is about being an entrepreneur with SMA. Link to 31 Days of SMA series: https://smanewstoday.com/catego...

In episode 87, host Kevin Schaefer talks with Allie Williams from Stillwater, Oklahoma. Allie is a vocal coach and she has SMA Type II. She talks about her lifelong musical journey, dealing with accessibility issues as a college student, and advice she has for others with SMA. ================================ To learn more about Evrysdi, please visit http://www. ApprovedForSMA.com ================...

SMA News Today’s multimedia associate, Price Wooldridge, discusses early work that supports Apitegromab’s safety as a Spinal Muscular Atrophy (SMA) therapy. Also, after a yearlong battle DeAnn Runge learns she’s been approved to receive the Jaco Robotic Arm. She reflects on the process and shares the emotions that come along with it. Are you interested in learning more about spinal muscular atroph...

SMA News Today’s multimedia associate, Price Wooldridge, discusses SadBaby, an organization raising donations to support children with Spinal Muscular Atrophy (SMA). Also, SMA News Today content creator DeAnn Runge gives a snapshot of the columnists at SMA News Today and their recent contributions. Topics range from relationships with others to the relationship with ones SMA body. Accessibility, D...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a partnership which aims to lower out-of-pocket costs for rare disease medications. Also, Forums Director Kevin Schaefer reads a column by Sherry Toh about her love for video games. 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 wearable cybernetic leg significantly improves walking ability for people with neuromuscular disabilities such as Spinal Muscular Atrophy (SMA). Also, DeAnn Runge shares stories that could be considered inspiration porn although she views them as inspirational because they serve a purpose. Are you interested in learning more...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how VRK1 mutations were found in two adult-onset Spinal Muscular Atrophy (SMA) Hispanics. In the forums there are a lot of great discussions going on. A topic creating a lot of buzz is the SSI Restoration Act of 2021. July being Disability Pride month is another topic with a lot of interest. Other topics include disability portraye...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a COVID-19 infection turns severe in a Spinal Muscular Atrophy (SMA) Type 1 child. News article: https://smanewstoday.com/news-posts/2021/07/14/covid-19-severe-fatal-inflammation-sma-type-1-child/ Forums Director Kevin Schaefer reads a column by Ari Anderson about treating your body right. Link to Ari’s column: https://smanewst...