CHMP Favors EU Approval of Evrysdi as 1st Oral, At-home SMA Treatment & Discussing GI Issues
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Committee for Medicinal Products for Human Use (CHMP) approval of Evrysdi as the first oral, at-home Spinal Muscular Atrophy (SMA) treatment. DeAnn Runge talks about her hesitancy to meet with a dietician to discuss GI issues she’s been dealing with. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
12 Maalis 20218min
Evrysdi Seen to Improve Survival, Motor Development of Infants with SMA Type 1
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi improving survival and motor development in infants with Spinal Muscular Atrophy Type 1. Forums Director Kevin Schaefer talks about managing his mental health and embracing the stillness. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
10 Maalis 202110min
Mother Raises 4 Adopted Girls From China With SMA, Chronic Illnesses
SMA News Today’s multimedia associate, Price Wooldridge, discusses a mother who has adopted and is raising four girls from China with Spinal Muscular Atrophy (SMA). Also, a variety of topics are being talked about on the SMA News Today forums because of the diverse community that not only includes those who have SMA but parents and caregivers as well. Recent conversations include van conversions, surgery with limited lung capacity, touchless thermometers and even iPhone accessibility features. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8 Maalis 20219min
Brain Involvement in SMA Type 1 Still Poorly Understood & Struggling to Personalize New Wheelchair
SMA News Today’s multimedia associate, Price Wooldridge, discusses why brain involvement in Spinal Muscular Atrophy Type 1 is still poorly understood. Also, DeAnn Runge talks about how she’s struggling to personalize her new chair. Right now she feels like it’s just another piece of equipment, but would like ideas on how to make it more unique to her. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
5 Maalis 20218min
Study Finds Varying Perspectives From Parents on Spinraza Therapy for Children
SMA News Today’s multimedia associate, Price Wooldridge, discusses the varying perspectives from parents on Spinraza therapy for their children. Forums Director Kevin Schaefer reads a column by Ari Anderson about what it means to be rare. Link to Ari’s column: https://smanewstoday.com/columns/2021/02/25/rare-diseases-flying-under-radar/ Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
3 Maalis 202114min
#77: Interview With Jeremy Camp, SMA Parent and Advocate
In episode 77, host Kevin Schaefer talks with Jeremy Camp from San Diego, California. Jeremy and his wife Amanda have three children, and their youngest son Asher has SMA Type 1. He talks about his family’s SMA journey, his personal life, and his mantra of surrendering to the situation. ================================ Link to Asher’s Facebook page: https://www.facebook.com/asherlennonlionsmajourney ================================ 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
2 Maalis 202136min
New SMN-boosting Molecule Shows Promise as Add-on Therapy & Rare Disease Day and New Forums Topics
SMA News Today’s multimedia associate, Price Wooldridge, discusses a new SMN-boosting molecule which shows promise as an add-on therapy for Spinal Muscular Atrophy (SMA). Also, Rare Disease Day is a day to recognize lives touched by rare diseases such as SMA. Discussions in the forums have revolved around this subject as have columns and even the latest Dose of DeAnn vlog where she interviews Dan and Viola who have their own YouTube channel, The Ginchiest. Links: https://smanewstoday.com/columns/2021/02/23/rare-disease-day-grateful-for-friends/ https://smanewstoday.com/columns/2021/02/18/rare-disease-traveler-finds-her-village/ The Ginchiest Interview: https://youtu.be/NOEa2nEoPT4 Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
1 Maalis 20219min
Rare Case of SMA Linked With Myoclonic Epilepsy Detailed in Report
SMA News Today’s multimedia associate, Price Wooldridge, discusses a rare case of Spinal Muscular Atrophy linked with a progressive myoclonic epilepsy. Balancing mind and body can be tricky. DeAnn Runge shares her struggles with accepting her limitations as it pertains to purchasing products she can use. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
26 Helmi 20216min
