Study Addresses Dilemmas Regarding Newborn Screening and SMA Treatment
Despite not being able to shop in person, DeAnn Runge finds a way to replace her television that decided to quit working at the most inopportune time. SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study addresses dilemmas regarding newborn screening and SMA treatment. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
25 Maj 20208min
How a Family and Doctor “Partnership” That Led to a Baby’s Spinraza Treatment
Forums Director Kevin Schaefer reads the latest post from caregiver columnist Michael Casten. SMA News Today’s multimedia associate, Price Wooldridge, discusses a family and doctor “partnership” that led to a baby’s Spinraza treatment. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
22 Maj 20207min
Fatigue Experienced Prior Spinraza Injection & Cure SMA COVID-19 Care Package
Forums Director Kevin Schaefer talks about the fatigue he experiences prior to a Spinraza injection. DeAnn’s latest vlog has been posted where she shows what’s included in the Cure SMA COVID-19 care package. Both Katie Napiwocki and Alyssa Silva have columns being discussed in the forums and the latest roundtable talking about Spinraza during the coronavirus is available for listening. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
20 Maj 20205min
#58 - How COVID-19 Affects Spinraza and Other Medical Appointments
In episode 58, the SMA News Today team talks about how the COVID-19 pandemic is impacting their Spinraza appointments and other medical procedures. Hosts Kevin Schaefer and Michael Morale, and forum moderators DeAnn Runge and Alyssa Silva, each share their personal experiences regarding this subject. They also discuss how telemedicine could potentially become the new normal for rare disease patients. To learn more about spinal muscular atrophy, visit our main website at www.smanewstoday.com.
19 Maj 202029min
How Lung Ultrasound is a Reliable Option to Chest X-rays for Monitoring Children
Forums moderator DeAnn Runge shares how she’s navigating the current world situation and how resuming operations in the next phase poses new challenges and concerns. SMA News Today’s multimedia associate, Price Wooldridge, discusses how lung ultrasound is a reliable option to chest X-rays for monitoring children. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
18 Maj 20209min
Study Suggests The Interplay of Motor Neurons and Glial Cells is At The Root of SMA
Forums Director Kevin Schaefer reads from Brianna Albers’ latest column “How Do We Maintain Post-traumatic Growth?” SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study suggests the interplay of motor neurons and Glial cells is at the root of Spinal Muscular Atrophy. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
15 Maj 20208min
Differences Between Risdiplam and SRK-015, Dealing With Anxiety & Taking Things For Granted
In the forums Michael Morale’s latest video, which points out the differences between risdiplam and SRK-015 as potential SMA treatments, has been a topic of conversation. Brianna Albers' series on dealing with anxiety that comes along with the coronavirus has been a popular topic as well as discussions about what “able-bodied” people take for granted, liquid albuterol and disabled authors. Forums Director Kevin Schaefer talks compares living with SMA to an ongoing chess match in his latest column. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
13 Maj 20205min
How Risdiplam Defies SMA “Natural History” in Type 1 Infants, According to FIREFISH Study Data
Forums moderator DeAnn Runge shares her experience of getting Spinraza amidst the COVID pandemic. SMA News Today’s multimedia associate, Price Wooldridge, discusses how Risdiplam defies SMA “natural history” in type 1 infants, according to FIREFISH study data. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
11 Maj 202011min
