SMA News Today Moderator

Since 2016 several treatment options for SMA have become available. Forums moderator DeAnn Runge discusses these options.

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study finds respiratory weakness in SMA is most pronounced in c…[Read more]

Happy Friday everyone! Hope you’re all doing well.

Check out Ryan’s latest video here. In this episode of Ryan’s Robotics, Ryan demonstrates how he uses his JACO robotic arm to open doors in his house. This is another example of how this device increases Ryan’s independence. Hope you all enj…[Read more]

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 pande…[Read more]

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…[Read more]

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 t…[Read more]

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 treatme…[Read more]

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 dur…[Read more]

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 chil…[Read more]

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…[Read more]

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 Alber’s 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 fo…[Read more]

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.…[Read more]

Forums Director Kevin Schaefer talks about an anthology of essays from the New York Times series on disability.

SMA News Today’s multimedia associate, Price Wooldridge, discusses how growth-friendly spinal implants may help SMA children before fusion s…[Read more]

Forums Director Kevin Schaefer talks about how SMA-related humor presents itself in unexpected moments. And also, this week the topics included on the forums range from discussing fundraising options in the current environment, using online therapy platforms such as Talkspace and even a book…[Read more]

Forums moderator DeAnn Runge discusses how looking at what makes her life easier now determines what would make her life easier moving forward.

SMA News Today’s multimedia associate, Price Wooldridge, discusses how taking part in adapted sports improves mental health in patients with Spinal Muscular Atrophy and other neuromuscular d…[Read more]

SMA News Today’s multimedia associate, Price Wooldridge, discusses the lack of muscle cell signaling which is seen to kill motor neurons in SMA-LED2.

SMA News Today’s Senior Director of Multichannel Content, Michael Morale, talks about how he’s had to trust others to help him during the COVID-19 pande…[Read more]

In this episode of “Ryan’s Robotics”, Ryan demonstrates how he mounted his cell phone to his Jaco Robotic arm. While there are numerous mounts that people can purchase online, Ryan’s suggestions are more cost-efficient and adaptable. Check it out here!

Do you have any questio…[Read more]

Forums Director Kevin Schaefer reads from his latest column about a new at-home exercise routine he’s developed, using his electric ceiling lift.

Also, on our forums over the last week we’ve covered many topics including telemedicine, therapy platforms, alternative exercise routines along with advance directives and hospital pre…[Read more]

While thinking about how to navigate the Coronavirus situation, forums moderator DeAnn Runge draws parallels to a family game they played. SMA News Today’s multimedia associate, Price Wooldridge, discusses motor gains and safety with Zolgensma’s IT use in a STRONG tria…[Read more]

Forums Director Kevin Schaefer writes about a new at-home exercise routine he’s developed, using his electric ceiling lift.

SMA News Today’s multimedia associate, Price Wooldridge, discusses the first patient treated in the Phase 2/3 trial, assessing higher doses of Spi…[Read more]

Forums Director Kevin Schaefer talks about how the pop-culture icon Kevin Smith impacted his life, both as a writer and as a person with a disability.

Also, there have been some recent discussions on the forums about keeping busy by playing phone games and using a Nintendo Switch. Creating at home exercise routines and using robotic…[Read more]