SMA News & Perspectives

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy may carry a higher risk of fluid buildup in the brain. Also, DeAnn Runge shares her reflections on Memorial Day by summarizing Brianna Albers recent column, "Naming Disability as a Space of Possibility". She also remembers her little brother who was an SMA warrior. Are you interested in learning more abo...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Apitegromab safely counters a muscle growth suppressor in patients with Spinal Muscular Atrophy (SMA). Also, DeAnn Runge has mixed feelings on the rebranding of the organization she received her service dog through after they removed the symbol of a wheelchair from their logo. Are you interested in learning more about spinal mu...

SMA News Today’s multimedia associate, Price Wooldridge, discusses free tools being offered by Cure SMA to boost the independence of Spinal Muscular Atrophy (SMA) patients. Also, Forums Director Kevin Schaefer reads a column about the realities of living with SMA and managing fatigue. 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, reads the column by Alyssa Silva, Life, One Cup At a Time, “I’m Remembering to Prioritize My Mental Health”. DeAnn Runge talks about the hot topics going on right now in the forums. The SMA version of Would You Rather is quite thought provoking. Another topic posted by one of our forum members regarding self-esteem has had a big response. Ot...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how neurofilaments may not be a biomarker for older patients with Spinal Muscular Atrophy (SMA) Type 1. Also, DeAnn Runge discusses the new CDC mask recommendations and her feelings associated with them. 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 adding thrombotic microangiopathy (TMA) to the list of safety concerns for Zolgensma. Also, Forums Director Kevin Schaefer reads a column by Ari Anderson about opening doors for new friendships and connections. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 82, host Kevin Schaefer talks with Hawken Miller from Newport Beach, California. Hawken is a features writer for SMA News Today’s parent company, BioNews, as well as a columnist for Muscular Dystrophy News Today. He discusses growing up with Duchenne MD, the evolution of his journalism career, and learning about the SMA community. ================================ Link to Hawken’s column...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how sex, and the number of copies of the SMN 2 gene influence age of onset for Spinal Muscular Atrophy Type 3 patients. Also, DeAnn Runge shares Katie Napiwocki’s recent column, Keeping the ‘Wild Green Thorns’ of Advocacy Fatigue at Bay. Katie has an eloquent way of describing some of the struggles those with disabilities go throug...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how UK NICE expands access to Spinraza for Spinal Muscular Atrophy (SMA) Type 3 patients. Also, DeAnn Runge talks about how disappointed she is that her appeal for the Jaco Robotic Arm was denied and how she’s not giving up. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday....

SMA News Today’s multimedia associate, Price Wooldridge, discusses a German study which recommends newborn screening for Spinal Muscular Atrophy (SMA), citing better outcomes. Also, Forums Director Kevin Schaefer reads a column about managing chaos when his caregiver’s car caught on fire. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.co...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a grant awared to find affordable treatments for children with Spinal Muscular Atrophy (SMA). Also, on the forums a fun game of SMA Would You Rather is going on. Every couple of weeks a question is posted to the SMA community. Questions range from temperature preference to caregiver attributes. Other forum topics include blocking o...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Novartis is poised for their Phase 3b SMART study of Zolgensma. Also, DeAnn Runge shares a recent adventure she went on to a greenhouse in the country. She even talks about how she was caught off guard and how she handled the situation. Are you interested in learning more about spinal muscular atrophy? If so, please visit https...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a Danish family raising $2.4 million for their daughter’s Zolgensma therapy. Also, Kevin Schaefer reads a column about staying true to himself and working in management. Link to Kevin’s column: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schaefer/ Are you interested in learning more about spinal mus...

In episode 81, host Kevin Schaefer talks with Chaz Hayden from Princeton, New Jersey. Chaz is a writer and YouTuber with SMA. He talks about growing up with SMA, starting college at a young age, and his upcoming young adult novel. ================================ Link to Chaz’s YouTube channel: https://www.youtube.com/channel/UCwPeqLbJO9s2v9UDrdbzbnQ ================================ Music Credits:...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma may lead to faster, greater gains than Spinraza in Spinal Muscular Atrophy (SMA) infants. Also, DeAnn Runge reads an article that really struck a chord with her. Halsey’s latest column, "It’s Time to Stop Stigmatizing Lifesaving Tracheostomy Tubes", dives into the unfavorable stigmatism that surrounds trachs and how t...

SMA News Today’s multimedia associate, Price Wooldridge, discusses neurofilaments, before beginning Spinraza, may predict motor improvements in children with Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reviews the Oscar nominated film "The Sound of Metal". The plot of which features the drummer of a heavy metal band who suddenly loses his hearing. DeAnn draws several parallels to this film in...

SMA News Today’s multimedia associate, Price Wooldridge, discusses Health Canada’s approval of Evrysdi for at-home treatment in SMA patients. Also, Forums Director Kevin Schaefer reads a column by Ari Anderson about his friendship with a North Carolina senator. Link to Ari’s column: https://smanewstoday.com/columns/2021/04/22/importance-people-recognize-my-worth-senator-thom-tillis/ Are you intere...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the immune reponse to Zolgensma can be common in older Spinal Muscular Atrophy (SMA) children. Also, SMA News Today content creator DeAnn Runge focuses on a couple columns that struck a chord with her. Brianna’s latest column, "The Green-eyed Elephant in the Room", talks about something she’s had to contend with her whole life: jea...

SMA News Today’s multimedia associate, Price Wooldridge, discusses prenatal enrollment of newborns for Spinal Muscular Atrophy (SMA) leads to faster results and speedier treatments. Also, DeAnn Runge shares how she turned around a frustrating situation into success all while keeping her cat entertained. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://...

SMA News Today’s multimedia associate, Price Wooldridge, discusses Apitegromab improving or stabilizing motor function in children and young adults with Spinal Muscular Atrophy (SMA). Forums Director Kevin Schaefer reads a column about his wheelchair malfunctioning and how he handled the situation. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smane...

In episode 80, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss updates on Scholar Rock’s treatment, Apitegromab, as well as other news stories and forum topics. Finally, they highlight some recent columns from our main website. ================================ Links to news stories and forum topics: -Cost of Rare Diseases in US? Nearly...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the European Alliance for Newborn Screening calling on all European states to introduce routine screening for all newborns for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge talks about the latest topics being discussed on the forums. As allergy season is ramping up ways to combat the symptoms are an all-important area of convers...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the architecture of the SMN complex, which is altered in people with Spinal Muscular Atrophy (SMA). Also, throughout her lifetime DeAnn Runge has had the unique opportunity to use rear, mid and front wheel drive wheelchairs. In her latest Dose of DeAnn vlog she shows a glimpse of all three and talks about making her decision. Are y...

SMA News Today’s multimedia associate, Price Wooldridge, discusses spinal fluid changes with Spinraza’s use in patients with Spinal Muscular Atrophy (SMA). Also, Kevin Schaefer reads a column by Ari Anderson about building and maintaining a team of “masked” advocates. 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 Evrysdi’s approval in Europe as the first oral, at-home treatment for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reads the latest column from Brianna Albers as she continues the quest to start the SMA treatment Evrysdi, The Evrysdi Chronicles: Full Speed Ahead. Are you interested in learning more about spinal muscular atrophy...