Risdiplam Success in Treating SMA Type 1 Babies in FIREFISH Study & Kevin's Spinraza Injection
Forums Director Kevin Schaefer talks about his most recent Spinraza injection and SMA News Today’s multimedia associate, Price Wooldridge, discusses the Risdiplam success in treating SMA Type 1 babies...
28 Helmi 20205min
Talking About Rare Disease Day & Accessible Parking, Sleepovers with SMA and Product Reviews
Forums Director Kevin Schaefer talks about the upcoming Rare Disease Day, and what it means to him. Also, DeAnn Runge shares the latest activity going on in the forums. Among the topics being discus...
26 Helmi 20206min
The Discovery of a Potential New SMA Genetic Modifier & Having a Great Deal of Strength
Having gone through a life threatening ordeal, forums moderator DeAnn Runge knows despite being physically weak she has a great deal of strength. As a reminder she has a little blue notebook. SMA Ne...
24 Helmi 20208min
How a CSF Protein Profile May Help Predict Spinraza Responses in Late-Onset SMA Patients
Forums Director Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how a CSF protein profile...
21 Helmi 20207min
Kevin Schaefer Reads His Week’s Motivational Post & Katie Napiwocki's Comeback as a Columnist
Forums Director Kevin Schaefer reads from this week’s motivational post in the SMA News Today forums and we're also happy to welcome Katie Napiwocki back into the rotation of SMA News Today columnists...
19 Helmi 20204min
#52 - Getting to Know Luisa Palazola and Rare Disease Day 2020
In episode 52, host Kevin Schaefer talks with Luisa Palazola, a Community Manager for SMA News Today. Luisa is from Memphis, Tennessee, and she has another rare genetic condition called cystic fibrosi...
18 Helmi 202039min
How Magnetic Rods May Help Scoliosis in Children with SMA & Living With Caution, Not Fear
Finding the balance between living cautiously and fearfully can be challenging. Forums moderator DeAnn Runge shares how she navigates that delicate balance. Also, SMA News Today’s multimedia associa...
17 Helmi 20206min
Early Access Program From Roche for SMA Therapy Risdiplam in Europe
SMA News Today’s multimedia associate, Price Wooldridge, discusses an early access program from Roche for SMA therapy Risdiplam in Europe and forums Director Kevin Schaefer talks about forming friends...
14 Helmi 20204min
