Cure SMA Conference Going Virtual in 2020 & Tips On Purchasing A New Electric Wheelchair
Forums Director Kevin Schaefer talks about celebrating six years with his caregiver Randy. With the Cure SMA Conference going virtual this year it’s led to many topics of conversation on the forums. In other discussions efforts to be inclusive regarding diversity in the SMA community have been brought up. Michael Morale’s latest video regarding tips on wheelchair selection has been released as well. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
10 Juni 20207min
Feeding Issues Are Still Common Among SMA Type 1 Infants, Despite New Therapy Options
SMA News Today’s multimedia associate, Price Wooldridge, discusses how feeding issues still are common among SMA Type 1 infants, despite new therapy options. As salons open up forums moderator talks about how she decided to risk it for a haircut. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8 Juni 20206min
Real-World Study Shows That Spinraza Meets Most Therapeutic Expectations of Adult SMA Patients
SMA News Today’s, Senior Director of Multichannel Content, Michael Morale, discusses a real-world study that shows that Spinraza meets most therapeutic expectations of adult SMA patients. Forums Director Kevin Schaefer shares the story of the first trip he took with his caregiver Randy a few years ago. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
5 Juni 202012min
#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 pandemic. It's easy to wonder how long the pandemic will last and to dream about life returning to normal, but Brianna encourages listeners to facilitate contentment in the present. To keep herself engaged with what matters to her, Brianna is revising the first draft of her space fantasy novel, which features a disabled protagonist. She's also looking forward to playing with her new JACO robotic arm! Listen here, and check out Brianna’s weekly column, “The Wolf Finally Frees Itself.” Note: Brianna does have limited speech capabilities, but we chose to leave the recording as it is. We at SMA News Today want to provide our listeners with a range of voices. It is our responsibility to highlight the diversity within the SMA community. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
4 Juni 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 opens doors both literally and figuratively. Also being discussed are comfort levels with resuming activities as the world opens up as well as altering summer plans, like taking SMA conference virtual. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
3 Juni 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 become available. Forums moderator DeAnn Runge discusses these options. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
1 Juni 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 multimedia associate, Price Wooldridge, discusses SMA treatment and screening programs “essential” in the Covid-19 pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
29 Maj 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 difficult to breathe through them and some experiencing negative effects from wearing them, forum members are seeking alternatives. Other topics being discussed are questions posed during a courageous conversations panel, talking to your doctors about risdiplam and combating fatigue with matcha. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
27 Maj 20206min
