Sma News & Perspectives

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 that she says it’s worth the effort. 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 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 muscular atrophy? If so, please visit https://smanewstoday.com/

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: https://smanewstoday.com/category/31-days-of-sma/ Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 of SMA stories: https://smanewstoday.com/31-days-of-sma/ - MDA Launches New Podcast Hosted by SMA Advocate: https://smanewstoday.com/news-posts/2021/08/10/mda-new-podcast-host-sma-advocate-mindy-henderson/ - Advocates Lobby US Congress During Virtual Rare Disease Week: https://smanewstoday.com/news-posts/2021/08/03/advocates-lobby-us-congress-during-virtual-rare-disease-week-2021/ ================================ Links to columns: - ”Inviting People to Sit at the Table of My Disabled Life” by Katie Napiwocki: https://smanewstoday.com/columns/2021/07/22/relationships-inviting-people-sit-table-disabled-life/

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.com/

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 learning more about multiple sclerosis? If so, please visit https://multiplesclerosisnewstoday.com

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://smanewstoday.com/

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 synopsis of what’s been covered thus far. Are you interested in learning more about SMA? If so, please visit https://smanewstoday.com

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/category/31-days-of-sma/ Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 ================================ 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 www.smanewstoday.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 atrophy? If so, please visit https://smanewstoday.com/

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, Disability Pride and how success should be viewed are all among subjects discussed in the latest columns. 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 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 about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 portrayed in media, what the line is between inspirational and inspiration porn and Spinraza injection day woes. There are also members in various stages of pursuing a Jaco robotic arm. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/ Visit the SMA forums https://smanewstoday.com/forums/

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://smanewstoday.com/columns/2021/07/15/building-healthy-relationship-your-body/ Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 86, host Kevin Schaefer talks with Price Wooldridge from Fort Worth, Texas. Price is a voiceover contributor for the SMA News Today flash briefings, and he lives with a rare autoimmune disease called Lambert-Eaton Myasthenic Syndrome. Price discusses his background and diagnosis story, the commonalities and differences between SMA and LEMS, and his advice for others living with rare diseases. ================================ To learn more about Evrysdi, please visit 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 www.smanewstoday.com

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) treatment may be more effective by altering an underlying molecule. DeAnn Runge shares what having a service dog entails. She just completed her Public Access Recertification and details how it was different from years past. 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 improves motor function in Spinal Muscular Atrophy (SMA) Type 3 children. In recognition of Disability Pride Month, DeAnn Runge reads the column ‘All of Us Will Become Disabled and Sick’ by Brianna Albers. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/