Assistive Devices Should Be Standard in Managing SMA Type 1 & I’m Grateful for My Friends
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.smanewstoday.com.
24 Helmi 202111min
Quantitative MRI Is Sensitive Measure of Muscle Decline
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 others start their journeys. SMA News Today content creator DeAnn Runge reads, “My Hopes and Fears Resurface When Others Start SMA Treatment”. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
22 Helmi 202110min
Spinraza Improves Motor Function in Case of Teenager with Late-onset SMA
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 learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
19 Helmi 20217min
A ‘Miracle’: Spinraza Gives Boy a Chance to Grow Up & Life Is an Adventure, So Let’s Be Pioneers
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/
17 Helmi 202114min
#76: Discussing Treatment Updates, Vaccine Access, and Recent Columns
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 highlight some recent columns from our main website. ================================ Links to news stories: -https://smanewstoday.com/news-posts/2021/01/06/higher-dose-spinraza-trial-now-enrolling-part-b-after-no-safety-issues-found-in-part-a/ -https://smanewstoday.com/news-posts/2021/01/18/scholar-rock-topaz-apitegromab-trial-top-line-data-due-june-2021/ -https://smanewstoday.com/news-posts/2021/01/29/cure-sma-career-webinars-series/ ================================ Links to columns: -https://smanewstoday.com/columns/2021/01/22/wandering-lines-journey-unknown/ -https://smanewstoday.com/columns/2021/01/14/soaring-with-hope-welcome-aboard/ -https://smanewstoday.com/columns/2021/02/01/journey-internalized-ableism-belonging/ ================================ 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
16 Helmi 202150min
EMBRACE Trial Supports Spinraza’s Benefits in Broad Range of SMA Patients
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 muscular atrophy? If so, please visit https://smanewstoday.com/
15 Helmi 202112min
NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
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 distribution. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
12 Helmi 20217min
Rare Disease Groups, Pharmas Join SMA Europe Push for Newborn Screening
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 spinal muscular atrophy? If so, please visit https://smanewstoday.com/
10 Helmi 20217min
