Motor Function, Breathing Important in Choosing Treatment
SMA News Today’s multimedia associate, Price Wooldridge, discusses improvement in motor function, breathing, and ease of administration are important factors when Spinal Muscular Atrophy (SMA) patients and caregivers decide on treatment options. Plus, recent conversations in the SMA News Today forums include the efficacy of the new vaccines in combination with some SMA treatments. Also what to expect when starting Evrysdi and managing any side effects. Recent podcasts and columns are being talked about as well. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8 Feb 20218min
More Severe COVID-19 Symptoms Seen in Children with SMA Type 1
SMA News Today’s multimedia associate, Price Wooldridge, discusses more severe COVID-19 symptoms being seen in children with Spinal Muscular Atrophy (SMA) Type 1. Also, vlogger and forums moderator DeAnn Runge talks about her upcoming Dose of DeAnn vlog where she ventures out of what she refers to as hibernation. She shares where she went and why she decided to go as well as encourages viewers to surround themselves with what makes them happy. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
5 Feb 20217min
Better Ways of Capturing Progression in Types 2 and 3 Identified in Study
SMA News Today’s multimedia associate, Price Wooldridge, discusses better ways of capturing progression of motor abilities in Spinal Muscular Atrophy (SMA) Types 2 and 3. Forums Director Kevin Schaefer talks about the struggles of being a disabled extrovert during a pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
3 Feb 202110min
#75: Alvaro Cheherlian, Founder and CEO of Wrekt Svpply
In episode 75, host Kevin Schaefer talks with Alvaro Cheherlian from Sylmar, California. Alvaro is the founder and CEO of Wrekt Svpply, a clothing brand company. He talks about building his business, growing up with SMA Type 2, and his love for coffee and heavy metal. Also, Kevin and Alvaro take some time to geek out on movies and Marvel television. ================================ Link to Alvaro’s Instagram: https://www.instagram.com/_hotwheelz/ ================================ Wrekt Svpply Website: https://www.wrektsvpply.com/ ================================ Alvaro’s YouTube Channel: https://www.youtube.com/channel/UCcWgwtuV4piFFO2wAi5anUA ================================ 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 Feb 202138min
Cure SMA Booklet Outlines Possible Risks, Benefits of Combining Treatments
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Cure SMA booklet which outlines the possible risks and benefits of combining treatments for Spinal Muscular Atrophy (SMA). Also, several topics are being hashed over on the forums. Among them include breaking in a new wheelchair, frustrations with bureaucratic red tape, reflecting on being homebound for the last year, finding a new PCP and of course the ever popular topic of Evrysdi. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
1 Feb 20216min
TOPAZ Trial Results on Muscle Therapy Likely by June, Scholar Rock Says
SMA News Today’s multimedia associate, Price Wooldridge, discusses the TOPAZ trial results expected in June on a muscle-directed therapy for Spinal Muscular Atrophy (SMA). Plus, staying social during a pandemic isn’t easy. Cure SMA has found a way for the SMA community to connect during these difficult times. DeAnn Runge shares her experience with one of the adult online socials hosted by Cure SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
29 Jan 20216min
Resolutions, Mindsets and Emotions & Transitioning SMA Patients From Older To Newer Wheelchairs
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Halsey Blocher, From Where I Sit, “Advice From a Life Coach: Resolutions, Mindsets, and Emotions”. Forums Director Kevin Schaefer reads from an article on our HCP site about transitioning to a new wheelchair. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
27 Jan 20217min
Online for 2021, Team Cure SMA Race Series Planning Variety of Events
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Team Cure SMA endurance race series moving online in the current pandemic, and expecting more people to join. Also, Vlogger and Forums Moderator, DeAnn Runge shares an overview of recent SMA News Today columns. She finds each of them relatable to her life living with SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
25 Jan 20215min
