The Spinal Muscular Atrophy Podcast with Kevin Schaefer

SMA News Today’s multimedia associate, Price Wooldridge, discusses newborn screening for Spinal Muscular Atrophy (SMA) in Massachusetts being seen as highly accurate and effective. Forums Director Kevin Schaefer reads a column by Ari Anderson about stepping outside his comfort zone to ask for extra help. Link to Ari’s column: https://smanewstoday.com/columns/2021/06/24/asking-for-help-new-highs/ A...

SMA News Today’s multimedia associate, Price Wooldridge, discusses children with Spinal Muscular Atrophy (SMA) taking Spinraza, leanding to better swallowing and farther walking. Also, not only are the forums a great place to learn, they’re a fabulous place to share where members can really relate to each other in a unique way. New categories have been added that emphasize that fact. Weekly Wins i...

SMA News Today’s multimedia associate, Price Wooldridge, discusses meaningful improvements in motor abilities evident with apitegromab treatment in later-onset Spinal Muscular Atrophy (SMA) patients. Also, DeAnn Runge shares her adventure picking honeyberries and the challenges she faced. 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 Evrysdi being linked to motor function improvements in a broad range of people with Spinal Muscular Atrophy (SMA). Also, Forums Director Kevin Schaefer reads a column about finding community support through this year’s Cure SMA virtual conference. Link to Kevin’s column: https://smanewstoday.com/category/embracing-my-inner-alien-a-...

SMA News Today’s multimedia associate, Price Wooldridge, discusses adding a Spinal Muscular Atrophy (SMA) newborn screening program in North Carolina. Also, DeAnn Runge shares, Halsey Blocher’s latest column, “Finding a Bit of Myself in Truman Burbank,” where she draws parallels between her life and the movie The Truman Show. Are you interested in learning more about spinal muscular atrophy? If so...

SMA News Today’s multimedia associate, Price Wooldridge, discusses NICE issuing its final Zolgensma appraisal for eligible Spinal Muscular Atrophy (SMA) patients. For the second time the Cure SMA conference was held virtually. DeAnn Runge talks about what she gained from the conference. She also talks about her latest YouTube video that shows what’s inside a care package from Cure SMA. Are you int...

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup At a Time, “Navigating the Past Year Without Caregivers Has Been Challenging”. Also, Forums Director Kevin Schaefer reads a column by Ari Anderson about the power of saying yes. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 80, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss some topics from the 2021 virtual Cure SMA conference and general news updates. The team also talks about restrictions being lifted across the U.S. and the impact of this on the SMA community. Finally, they highlight some recent columns from our main website. ==============...

SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s NICE recommending against adding Evrysdi to the UK’s Public Health System. Also, DeAnn Runge reads Katie Napiwocki’s recent column, “Embracing the Growing Pains of New Wheels.” From the hesitancy to start the process to finding ways to adjust once the transition happens DeAnn can relate to it all. Read Katie's column here...

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Halsey Blocher, From Where I Sit, “SMA and Sibling Relationships: My Brother’s Perspective”. Also, DeAnn Runge talks about how she came to the decision to stick with Evrysdi. It was a difficult decision but she’s happy with her choice. Are you interested in learning more about spinal muscular atrophy? If so, please visit...

SMA News Today’s multimedia associate, Price Wooldridge, discusses Asuragen’s lab test which can speed up diagnosis of SMA carriers and patients. Also, Forums Director Kevin Schaefer reads a column from Alyssa Silva about reflecting on her diagnosis day. You can read Alyssa’s column here: https://smanewstoday.com/columns/2021/04/30/reflecting-diagnosis-day-30-years-later/ Are you interested in lea...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a stress-induced protein may serve as a new Spinal Muscular Atrophy (SMA) biomarker in infants. Also, SMA News today brings a variety of the most up to date content that relates to the SMA community. Between columnists, social media platforms, news and research all aspects of SMA life are covered. To help continue bringing rele...

SMA News Today’s multimedia associate, Price Wooldridge, discusses Apitegromab being granted a fast track designation by the U.S. Food and Drug Administration. DeAnn Runge talks about her upcoming appointment with her neurologist to discuss continuing with Evrysdi or switching back to Spinraza. She dreads making the wrong decision. Are you interested in learning more about spinal muscular atrophy?...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how the SMN2 copy number and a rare genetic variant influence the severity of Spinal Muscular Atrophy (SMA). Also, Forums Director Kevin Schaefer reads a column about embracing the outdoors and venturing into the unknown. Link to Kevin’s column: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schaefer/...

In episode 82, host Kevin Schaefer talks with Christine Getman and Scottie Foertmeyer from Portland, Oregon. Christine and Scottie are partners in life and in business, as they run the nonprofit Magic Wheelchair together. They talk about their relationship, advocacy work, and daily living. ================================ Link to Magic Wheelchair: https://www.magicwheelchair.org/ =================...

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. 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...