Zolgensma Helps Mobility of SMA Children in Qatari Real-world Study
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/
20 Aug 202110min
FDA Lifts Hold on Clinical Trials of Intrathecal OAV-101 & Self-Acceptance and Rejecting Ableism
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/
18 Aug 20216min
#88: SMA Awareness Month & 31 Days of SMA 2021
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/ - ”A Plea for Singapore to Approve SMA Treatments” by Sherry Toh: https://smanewstoday.com/columns/2021/08/04/plea-singapore-approve-sma-treatments/ - ”SMA Pride and Disability Language” by Kevin Schaefer: https://smanewstoday.com/columns/2021/08/10/sma-pride-disability-language/ ================================ 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 http://www.smanewstoday.com
17 Aug 202147min
Zolgensma-Evrysdi Combo Likely Beneficial for SMA Type 1
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/
16 Aug 20219min
Inviting People to Sit at the Table of My Disabled Life & 31 Days of SMA Thus Far
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
13 Aug 20219min
Muscular Dystrophy Canada Funds Projects on Newborn SMA Screening
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/
11 Aug 20218min
Spinraza Improves Lung Function in SMA Type 2 Child, Report Says
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/
9 Aug 20217min
Why My Journey With Disability Pride Isn’t Linear & 31 Days of SMA Initiative
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
6 Aug 20217min
