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 Apr 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 Apr 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 Apr 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 Apr 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 Apr 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 Apr 20206min
The SMA News Today Forums: a Place to Share Ideas That Will Brighten Spirits During Difficult Times
With a community full of problem solvers the forums have become a place to share ideas that will brighten spirits during these difficult times. Also, forums Director Kevin Schaefer reflects on past...
1 Apr 20205min
Global Rare Disease Group’s Goal to Have 1,000 New Therapies by 2027 & Benefits of a Service Dog
Forums moderator DeAnn Runge talks about how having a service dog has enhanced her life. SMA News Today’s multimedia associate, Price Wooldridge, discusses a global rare disease group’s goal to have ...
30 Mars 20208min
