#59 - A Conversation with Brianna Albers
In episode 59, host Kevin Schaefer talks with our very own columnist Brianna Albers. Brianna talks about quarantine, values-based living, and how she's keeping herself occupied during the COVID-19 pan...
4 Jun 202038min
Tips For Staying Active and Mentally Engaged This Summer & How The JACO Robotic Arm Opens Doors
Forums Director Kevin Schaefer shares some tips for staying active and mentally engaged this summer, while still remaining in self-isolation. A hot topic on the forums is how the JACO Robotic Arm ope...
3 Jun 20205min
Study Finds Respiratory Weakness in SMA is Most Pronounced in Childhood & Treatment Options for SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study finds respiratory weakness in SMA is most pronounced in childhood. Since 2016 several treatment options for SMA have beco...
1 Jun 20209min
SMA Treatment and Screening Programs “Essential” in The Covid-19 Pandemic
Forums Director Kevin Schaefer talks about how video games can benefit rare disease patients in hospitals right now, including those with neuromuscular conditions like SMA. SMA News Today’s multimedi...
29 Mai 20209min
Risdiplam, Switching Treatments & Difficult Breathing While Wearing Masks
Forums Director Kevin Schaefer talks about the investigational therapy risdiplam, and whether or not he would consider switching treatments. Masks are a hot topic on the forums. With finding it diffi...
27 Mai 20206min
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 Woo...
25 Mai 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...
22 Mai 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 ...
20 Mai 20205min
