Ideas for Staying Fit and Healthy During Isolation & Approval of Zolgensma for Treating SMA in Japan
Forums Director Kevin Schaefer talks about ideas for staying fit and healthy during COVID-19 isolation. SMA News Today’s multimedia associate, Price Wooldridge, discusses the approval of Zolgensma fo...
17 Huhti 20205min
Accessible Toys, Having Fun With Subscription Boxes & Kevin Schaefer's Obsession With Action Figures
The Easter holiday looked a lot different this year than it traditionally does. Forum members shared their plans for the holiday to make it special. Accessible toys was another topic of conversation. ...
15 Huhti 20206min
Odd Jobs, Spring Cleaning & French Study Finds Improvements in Palliative Care for SMA Type 1 Babies
Forums moderator DeAnn Runge is looking for solutions to help with odd jobs and spring cleaning. SMA News Today’s multimedia associate, Price Wooldridge, discusses a French study which finds palliati...
13 Huhti 20206min
FDA Shifts Risdiplam Decision to August to Include Data on Older Patients
Forums Director Kevin Schaefer talks about the Stephen Hawking biopic “The Theory of Everything,” and how this film explores disability. SMA News Today’s multimedia associate, Price Wooldridge, discu...
10 Huhti 20209min
Managing Spinraza Treatments, Caregivers, Outside Deliveries and More During COVID-19
COVID-19 is still a popular topic of discussion on the forums. Topics associated include continuing with Spinraza treatments, scheduling caregivers, how to handle outside deliveries and more. Also, f...
8 Huhti 20205min
#55 - Interview With Victor Guerra
In episode 55, host Kevin Schaefer interviews Victor Guerra from Fresno, California. Victor is an entrepreneur who has SMA Type 2, and he uses his online store to promote messages of positivity and mo...
7 Huhti 202052min
How Scoliosis Surgery in SMA Children is Linked to Permanent Motor Skill Loss
Amid the coronavirus crisis forums moderator DeAnn Runge has to decide if she wants to risk exposure to the virus to continue her Spinraza treatments. SMA News Today’s multimedia associate, Price Woo...
6 Huhti 20206min
Discussing Markers of Inflammation Essential for AAV Gene Therapy Use & Thoughts About “Crip Camp"
Forums Director Kevin Schaefer talks about the new Netflix documentary “Crip Camp,” which tells the story of a summer camp in the 50s and 60s for teens with disabilities. SMA News Today’s multimedia...
3 Huhti 20206min
