Spinal Fluid Changes With Spinraza’s Use Mild, Possibly Due to Lumbar Puncture
SMA News Today’s multimedia associate, Price Wooldridge, discusses spinal fluid changes with Spinraza’s use in patients with Spinal Muscular Atrophy (SMA). Also, Kevin Schaefer reads a column by Ari Anderson about building and maintaining a team of “masked” advocates. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
14 Apr 202110min
Evrysdi Approved in Europe as First Oral, At-home Treatment & The Evrysdi Chronicles
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi’s approval in Europe as the first oral, at-home treatment for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reads the latest column from Brianna Albers as she continues the quest to start the SMA treatment Evrysdi, The Evrysdi Chronicles: Full Speed Ahead. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
12 Apr 202110min
Benefits of SMA Newborn Screening Outweigh Disadvantages In New Survey & Everyday Struggles With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses the benefits of Spinal Muscular Atrophy (SMA) newborn screening outweighing the disadvantages. After watching a YouTube video where a wife and another friend help a gentleman with quadriplegia into a hot tub, DeAnn Runge talks about the struggles of certain activities and questions if they’re worth the effort. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
9 Apr 202110min
#79: Interview With Ainaa Farhanah, a Graphic Designer Living with SMA
In episode 79, host Kevin Schaefer talks with Ainaa Farhanah from Kuala Lumpur, Malaysia. Ainaa is a graphic designer and art teacher with SMA. She talks about growing up with SMA, family, college, and advocating for others with disabilities. Note: Ainaa does have limited speech capabilities, but we chose to leave the recording as it is. We at SMA News Today want to provide our listeners with a range of voices. It is our responsibility to highlight the diversity within the SMA community. You can find the transcript of this conversation here: http://bit.ly/SMA-Podcast79-Transcript ================================ Link to Ainaa’s Instagram: https://www.instagram.com/ainaafrhanah/tagged/ ================================ Music Credits: Alec's Band A Young Griffin Boyle In Drag ================================ 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
8 Apr 202126min
Scholar Rock Wins US Patent for Apitegromab & Receiving The COVID-19 Vaccine And Getting Outside
SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock winning a U.S. patent to Apitegromab for treating Spinal Muscular Atrophy (SMA). Also, Kevin Schaefer talks about returning to movie theaters after receiving the COVID-19 vaccine. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7 Apr 20217min
Zolgensma Helped Pre-symptomatic Babies Achieve Age-Appropriate Motor Milestones
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma helped pre-symptomatic babies with Spinal Muscular Atrophy (SMA) achieve age-appropriate motor milestones. Instagram is a fantastic way to connect with the SMA community. Kevin Schaefer has been host for live conversations with Dr. Danielle Sheypuk and Alyssa Silva who talked about a wide range of topics. Upcoming guests include Angela and Justin Titcombe and Hugo Travino. The forums serve as another great way to connect with the community as do the columns. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
5 Apr 202111min
Zolgensma Continues to Prevent Motor Function Decline for 5 Years
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgenzma continues to prevent motor function decline for five years for patients with Spinal Muscular Atrophy (SMA). Also, SMA News Today content creator DeAnn Runge talks about how justifying our needs has become second nature. She discusses how she’s appealing a denial for the Jaco Robotic Arm as well as other hoops she has to jump through to remain living her life. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
2 Apr 202111min
Evrysdi Leads to Longer-term Benefits for SMA Types 2, 3, Data Show
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi leads to longer-term benefits for Spinal Muscular Atrophy (SMA) patients, Types 2 and 3. Forums Director Kevin Schaefer talks about disability representation in the movie “Zack Snyder’s Justice League.” Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
31 Mars 202111min
