SMA News & Perspectives

SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi’s approval in Brazil for Spinal Muscular Atrophy (SMA). Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about spending time in and out of his chair, in order to give his body the balance it requires. DeAnn Runge talks about a podcast she did with Kevin Schaefer as well as shares the latest forum topics. Among them include managing stress, pet dilemmas and beach products. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.

In this episode, host Kevin Schaefer talks with LaMondré Pough from Columbia, South Carolina. Lamondré is a public speaker, consultant, and advocate for people with disabilities. He currently serves as the CSO for Ruh Global Impact. Listen to LaMondré talk about his education and family life, career path, and where he got the nickname “Bubba.” ================================ Link to LaMondré’s Yo...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how people living with Spinal Muscular Atrophy (SMA) can apply for financial help for treatment to the PAN Foundation. DeAnn Runge talks about what changes she makes to her routine as winter sets in. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses Adults with SMA who have sought specialty care after Spinraza’s approval, may have more severe disease. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer reads from one of his older columns about embracing the imaginative spirit of Halloween. Plenty of conversations are happening in the forums. In her recent column Brianna Albers shares her feelings about insurance denying her quest for a JACO Robotic Arm. Several topics have revolved around caregivers. Cold feet, in the literal and figurative sense are also among the...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the “Think 3 at 3 Months” drive, seeking to raise awareness of infant movement milestones that, if missed, could mean Spinal Muscular Atrophy (SMA) or other neuromuscular conditions. DeAnn Runge talks about the difficulties of navigating the healthcare system to obtain PCA services. She’s looking into Consumer-Directed Community Su...

SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA Type 3 adults may have issues regulating a component of cell’s cytoskeleton, according to a study. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about memories of a dying shopping mall in his hometown, and how it made him think about adapting to change. DeAnn Runge shares the latest column by Brianna Albers, The Evrysdi Chronicles: Waiting for a Diagnosis, where she writes about her frustrating neurology appointment. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstod...

In this episode, host Kevin Schaefer talks with DeAnn Runge, vlogger and forum moderator for SMA News Today. DeAnn talks about acquiring her new service dog, Horton, and adapting to life with him. She also discusses testing out a JACO robotic arm, and getting a new wheelchair. Finally, Kevin and DeAnn chat about a few recent columns from our main website. ================================ To learn...

SMA News Today’s multimedia associate, Price Wooldridge, discusses 4-aminopyridine’s failure to improve muscle function in SMA Type 3 patients. DeAnn Runge talks about how her new service dog Horton is adjusting to life in Minnesota. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA Type 1 infants, treated with Zolgensma, are achieving milestones. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about a spontaneous trip he took on his 26th birthday last year, and the adventures that came from it. A variety of topics are being discussed in the forums. Among them include enjoying reading, socially distant celebrations, maskne and delayed deliveries. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.

SMA News Today’s multimedia associate, Price Wooldridge, discusses infants who are receiving Evrysdi continue to improve and achieve motor milestones in phase 2 and 3 trial data. In light of National Disability Employment Awareness Month (NDEAM) DeAnn Runge shares her first job experiences and why it’s important to talk about this topic. Are you interested in learning more about spinal muscular at...

SMA News Today’s multimedia associate, Price Wooldridge, discusses Novartis opening, at FDA request, a new trial of Zolgensma for older patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about how SMA has affected his ability to draw, and about treasuring the little things. Recent topics being discussed in the SMA News Today forums include setting boundaries with caregivers, vlogs from DeAnn Runge & Michael Morale as well as reflecting on the changing season. To learn more about spinal muscular atrophy, visit our website at http://www.smanewsto...

In episode 67, host Kevin Schaefer talks with Maylan Chavez from Miami, Florida. Maylan is an ambassador for the company EyeGaze Inc., which develops eye tracking technology for people with disabilities. During this interview, Maylan shares her experiences as an adult with SMA Type 2, and offers some advice for others in the community. ================================ To learn more about Evrysdi,...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza leads to motor gains over time in Spinal Muscular Atrophy (SMA) Type 3 adults, according to a real-life study. DeAnn Runge talks about meeting her new service dog and what training is like. She also discusses the different types of dog placements that were in her class. Are you interested in learning more about spinal...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the GridPad Trilogy communication device, which aids people with speech and motor disorders who have Spinal Muscular Atrophy (SMA). Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about how the past few months have been for him, and how he’s adapted to a new normal. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.

SMA News Today’s multimedia associate, Price Wooldridge, discusses the Electric Bike Technologies company donating Liberty Trikes to aid the mobility of children with Spinal Muscular Atrophy (SMA) and similar challenges. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses AveXis, now known as Novartis Gene Therapies, focusing on continued work with genetic diseases. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer recaps his adventures during a recent eye doctor appointment, and talks about how everything takes extra effort in the world of SMA. DeAnn Runge talks about the latest SMA News Today forums topics such as getting a service dog, staying hydrated, preparing for a new wheelchair and more. To learn more about spinal muscular atrophy, visit our website at http://www.smane...

SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s National Institute for Health and Care Excellence (NICE) widening its Zolgensma appraisal due to the European marketing authorization. DeAnn Runge shares what it was like to demo a JACO Robotic Arm. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses the activities currently underway for Newborn Screening Awareness Month. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/