Genetic Analysis of Families Finds Novel Mutations in SMA & The Lack Of Privacy When Living With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses a genetic analysis of families with a member affected by Spinal Muscular Atrophy (SMA) which finds novel mutations in SMA patients. SMA News Today’s forums moderator, DeAnn Runge shares her experiences with the lack of privacy that can be an issue when you have 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 http://www.smanewstoday.com
18 Joulu 202010min
Zolgensma-associated Liver Abnormalities Common but Manageable & I’m Disappointed, and That’s OK
SMA News Today’s multimedia associate, Price Wooldridge, discusses a study which finds Zolgensma-associated liver abnormalities are common but manageable in children with Spinal Muscular Atrophy (SMA). SMA News Today’s Columnist and Forums Director, Kevin Schaefer, reads from Brianna Albers’ column about facing disappointment during the holiday season. ================================ 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
16 Joulu 202011min
#72: Evrysdi, Physical and Mental Health, and Highlights of 2020
In episode 72, Kevin Schaefer and Michael Morale reflect on the craziness of 2020, and they highlight some of the key pieces of content SMA News Today created this year. They also discuss Michael’s ongoing Evrysdi treatments, and share tips for improving one’s mental and physical health. ================================ Link to DeAnn’s videos: https://www.youtube.com/playlist?list=PLtRCVbeiSodnTNonRZjqAunFtBXiFxVPi Podcast with LaMondre Pough: https://soundcloud.com/sma-news-today/69-interview-with-lamondre-pough Brianna Albers’ column: https://smanewstoday.com/columns/2020/07/27/disability-pride-month-ada-committed-change/ ================================ 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
15 Joulu 202047min
Neurological Alliance Report Calls for Better Treatment, Care for UK Patients
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Neurological Alliance report calling for better treatment and care of U.K. patients living with rare neurological conditions such as Spinal Muscular Atrophy (SMA). SMA News Today’s forums moderator, DeAnn Runge discusses an article written by Alyssa Silva. She talks about how Alyssa had doubts about her ability to start a small business, but she tackled it disregarding the challenges SMA brought to the table. ================================ 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
14 Joulu 20207min
Spinraza Linked to Temporary Abnormalities in Immune Cells in 2 SMA Infants
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza is linked to temporary abornalities in immune cells in two Spinal Muscular Atrophy (SMA) infants. SMA News Today’s forums moderator, DeAnn Runge talks about how the process is going adjusting to her new wheelchair. ================================ 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
11 Joulu 20209min
Extensive Trial Monitoring Confirms Evrysdi Does Not Damage Vision & The Series "Boy Meets World"
SMA News Today’s multimedia associate, Price Wooldridge, discusses how extensive trial monitoring confirms Evrysdi does not damage vision in children or adults with Spinal Muscular Atrophy (SMA). SMA News Today’s Forums Director, Kevin Schaefer, talks about how the series “Boy Meets World” impacted him, and the correlation between creativity and SMA. ================================ 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
9 Joulu 202011min
Olesoxime Failed to Benefit SMA Type 2 and 3 Patients, Final Trial Data Show
SMA News Today’s multimedia associate, Price Wooldridge, discusses how olesoxime failed to benefit Spinal Muscular Atrophy (SMA) Type 2 and 3 patients in a final trial. SMA News Today’s forums moderator, DeAnn Runge discusses recent topics in the SMA News Today forums. A big topic of course is COVID. From dealing with the effects to anticipating the vaccine many discussions revolve around it. In other news Michael Morale’s latest YouTube video has been posted regarding the steps he took to get the latest FDA approved treatment Everysdi. Other conversations in our forums include relieving neck tension, disease progression, switches and favorite assistive technology. ================================ 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
7 Joulu 20209min
Gene Therapy Given Directly to Spinal Canal Might Be Safer With ‘Silencing’ Step
SMA News Today’s multimedia associate, Price Wooldridge, discusses how gene therapy, given directly to the spinal canal, might be safer with a “silencing” step. SMA News Today’s forums moderator, DeAnn Runge talks about everything shes had to get caught up with after quarantine. ================================ 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
4 Joulu 202010min
