Sma News & Perspectives

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 atrophy? If so, please visit https://smanewstoday.com/

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.smanewstoday.com.

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, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

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 muscular atrophy? If so, please visit https://smanewstoday.com/

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.smanewstoday.com.

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/

Forums Director Kevin Schaefer talks about his experiences with a BiPAP machine, and the pros and cons of wearing one. DeAnn shares Halsey’s latest column that talks about wardrobe challenges. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.

In episode 66, hosts Kevin Schaefer and Michael Morale discuss news regarding the FDA-approved treatment Evrysdi, and Michael’s decision to switch to this therapy. They also talk about the clinical trial drug SRK-015, which is developed by Scholar Rock. Finally, Kevin reads excerpts from some of our recent columns. ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

In episode 65, host Kevin Schaefer talks with Dwight Reed from Virginia. Dwight is a father of three, and his youngest daughter has SMA Type 1. Dwight discusses his family life, engaging with the SMA community, treatments, and more. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.

In this episode, members of the SMA News Today team discuss assistive technologies that have had a unique impact on their lives. These technologies include electric wheelchairs, Amazon Echo devices, the JACO robotic arm, adaptive vehicles, and more. ================================= To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com

In episode 62, host Kevin Schaefer talks with Shawn Stewart from southern California. Shawn has his own tax service business, and he has SMA Type 3. He discusses growing up with a disability, adult life, and getting married in 2019. Listen here! To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.

In episode 61, the SMA News Today team shares some highlights from the 2020 virtual Cure SMA conference. They discuss webinar presentations, research updates, and virtual social events which they participated in. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com

Forums Director Kevin Schaefer talks about taking part in the first virtual Cure SMA conference. This week’s forum topics include DeAnn’s latest vlog regarding creating a sanctuary, scoliosis as an adult as well as epic wheelchair stories. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/