Navigating the Past Year Without Caregivers Has Been Challenging
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/
16 Juni 20218min
#84: Scholar Rock Updates and Embracing the Growing Pains of New Wheels
In episode 84, 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. ================================ Links to news stories and forum topics: - Apitegromab Put on FDA’s Fast Track https://smanewstoday.com/news-posts/2021/05/26/muscle-directed-therapy-apitegromab-put-on-fda-fast-track/ - SMA Added to North Carolina’s Newborn Screening Program https://smanewstoday.com/news-posts/2021/06/09/sma-added-north-carolina-newborn-screening-program/ - Discussion on the film "Sound of Metal" https://smanewstoday.com/forums/forums/topic/have-you-watched-sound-of-metal/ ================================ Links to columns: - ”Embracing the Growing Pains of New Wheels” by Katie Napiwocki https://smanewstoday.com/columns/2021/06/03/new-power-wheelchair-embracing-growing-pains/ - ”I’m Taking My Time Returning to Normal” by Brianna Albers https://smanewstoday.com/columns/2021/06/07/taking-my-time-returning-normal/ - ”I Don’t Want a World Without SMA. Here’s Why.’” by Sherry Toh https://smanewstoday.com/columns/2021/06/09/gene-editing-world-without-sma/ ================================ 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
15 Juni 202147min
NICE Initially Against Adding Evrysdi to UK Public Health System
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: https://smanewstoday.com/columns/2021/06/03/new-power-wheelchair-embracing-growing-pains/ Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
14 Juni 202113min
SMA and Sibling Relationships: A Brother’s Perspective & Sticking With Evrysdi
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 https://smanewstoday.com/
11 Juni 20216min
Asuragen’s Lab Test Can Speed Up Diagnosis of SMA Carriers and Patients
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 learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
9 Juni 20219min
Stress-induced Protein May Serve as New SMA Biomarker in Infants
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 relevant content please take the survey: https://bionews.sjc1.qualtrics.com/jfe/form/SV_aY8P54qxfvCLPgi Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7 Juni 20218min
Apitegromab, Muscle-directed Therapy for SMA, Put on FDA Fast Track
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? If so, please visit https://smanewstoday.com/
4 Juni 20216min
SMN2 Copy Number and Rare Variant Influence SMA Severity
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/ Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
2 Juni 202110min
