Neurofilaments and Nerve-muscle Test Show SMA Severity & SMA Adults Struggle to Access Evrysdi
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how blood levels of neurofilaments and the results of a nerve-muscle test may be biomarkers for SMA onset/severity and treatment response. Also, Sherry Toh’s SMA News Today article, “As an Adult With SMA, I Need Access to Evrysdi, Too,” pulls at your heartstrings. DeAnn can relate to those feelings as it reminds her of when she was trying to access Spinraza. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
16 Joulu 202114min
#96: Chat with SMA Columnist Halsey Blocher and her Mother & Caregiver, Heather Dye
In this episode, host Kevin Schaefer talks with Halsey Blocher and Heather Dye from Fort Wayne, Indiana. Halsey is a columnist for SMA News Today, and her mother Heather is a caregiver and advocate. During this conversation, they talk about the nuances of living with SMA, transitioning to adulthood, and advice they have for others in the SMA community. ================================ Halsey’s column: https://smanewstoday.com/from-where-i-sit-halsey-blocher/ Heather’s 31 Days of SMA story: https://smanewstoday.com/31-days-of-sma/2020/08/14/31-days-of-sma-heather-halsey-dye/ ================================ 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
14 Joulu 202134min
Novartis Applauds Move to Reimburse Families for Zolgensma & Making Connections with SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Novartis Pharmaceuticals Canada applauds the province of Quebec for its move to offer public reimbursement for the SMA gene therapy Zolgensma. Also, making meaningful connections has become difficult for DeAnn Runge over the past several years. She explains why that is and shares some of her recent experiences. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
13 Joulu 20216min
Acute Liver Failure Warning Added to Zolgensma Label & Time Management and SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the U.S. FDA has added acute liver failure to the list of concerns with use of Zolgensma in children with spinal muscular atrophy. Plus, the value of time can be a difficult concept to master. In Ari Anderson’s recent article, “Time Is a Balancing Act, Let’s Learn How to Do It Together,” he talks about the value of time and how he prioritizes his precious time. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
9 Joulu 20219min
Oral SMA Therapy Is Ideal and Aids Motor Skills and Breathing & Why No Changes in SMA is Good
SMA News Today’s multimedia associate, Price Wooldridge, discusses how better/stable motor function and breathing, along with oral use, is ranked high in a UK survey of SMA type 2 and 3 adult patients, caregivers. Plus, after completing her annual neurology visit and assessments DeAnn talks about why no change is a good thing where SMA is concerned. She gives an update on where she’s at in her treatment journey and talks about her plan going forward. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6 Joulu 202111min
#93: Interview With Garrett Lerner, Co-creator and Executive Producer of NBC Series “Ordinary Joe”
In episode 93, host Kevin Schaefer talks with Garrett Lerner from Los Angeles, California. Garrett is the co-creator and co-showrunner of the NBC drama series “Ordinary Joe,” and he is a father to a son with SMA type II. He talks with Kevin about the origins of the show and its disability representation, his family life, and the importance of seeing disabled characters on screen. ================================ Watch Ordinary Joe: https://www.nbc.com/ordinary-joe ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
2 Marras 202144min
Phase 3 Apitegromab Trial Planned for Non-ambulatory Types 2 And 3 & Latest Topics on Our Forums
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article on how Scholar Rock plans to initiate a Phase 3 trial of apitegromab in spinal muscular atrophy types 2 and 3 patients unable to walk by year's end. Also DeAnn Runge gives an update on the latest happenings over on the forums. Relevant topics like the vaccines, the latest cell phones and accessibility apps are being discussed as well as the new TV show Ordinary Joe. Finding caregivers, dietary issues and October being National Disability Employment Awareness Month are also at the forefront of conversation. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
28 Loka 20217min
Neurofilament Blood Levels Likely to Predict Treatment Response in SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses a news article on how blood levels of phosphorylated neurofilament heavy chain, nerve cell damage marker, are related to greater motor gains in SMA infants, children. Also, as treatments emerge, the SMA type system is evolving. DeAnn Runge talks about what she feels are the faults with the system. She also discusses how she'd like to see it change. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
25 Loka 20219min
