#108: A Mother Discusses the Approval of Evrysdi for Infants With SMA

Forums Director Kevin Schaefer talks about an anthology of essays from the New York Times series on disability. SMA News Today’s multimedia associate, Price Wooldridge, discusses how growth-friendly spinal implants may help SMA children before fusion surgery. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

8 Maj 20206min

Forums Director Kevin Schaefer talks about how SMA-related humor presents itself in unexpected moments. And also, this week the topics included on the forums range from discussing fundraising options in the current environment, using online therapy platforms such as Talkspace and even a book discussion. To learn more about spinal muscular atrophy, visit www.smanewstoday.com.

6 Maj 20205min

In episode 57, host Kevin Schaefer interviews Heather Kerstetter from Philadelphia, Pennsylvania. Heather is a social worker who has SMA Type 3. She talks about growing up with SMA, relationships, and her advocacy work for people with disabilities. To learn more about spinal muscular atrophy, visit www.smanewstoday.com.

5 Maj 202026min

Forums moderator DeAnn Runge discusses how looking at what makes her life easier now determines what would make her life easier moving forward. SMA News Today’s multimedia associate, Price Wooldridge, discusses how taking part in adapted sports improves mental health in patients with Spinal Muscular Atrophy and other neuromuscular disorders. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

4 Maj 20208min

SMA News Today’s multimedia associate, Price Wooldridge, discusses the lack of muscle cell signaling which is seen to kill motor neurons in SMA-LED2. SMA News Today’s Senior Director of Multichannel Content, Michael Morale, talks about how he’s had to trust others to help him during the COVID-19 pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

1 Maj 20206min

Forums Director Kevin Schaefer reads from his latest column about a new at-home exercise routine he’s developed, using his electric ceiling lift. Also, on our forums over the last week we’ve covered many topics including telemedicine, therapy platforms, alternative exercise routines along with advance directives and hospital preparedness folders. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

29 Apr 20205min

While thinking about how to navigate the Coronavirus situation, forums moderator DeAnn Runge draws parallels to a family game they played. SMA News Today’s multimedia associate, Price Wooldridge, discusses motor gains and safety with Zolgensma’s IT use in a STRONG trial. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

27 Apr 20209min

Forums Director Kevin Schaefer writes about a new at-home exercise routine he’s developed, using his electric ceiling lift. SMA News Today’s multimedia associate, Price Wooldridge, discusses the first patient treated in the Phase 2/3 trial, assessing higher doses of Spinraza. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

24 Apr 20206min