100 Free Zolgensma Treatments Worldwide in 2020 & Unplugging the iPad, Waste of Time
SMA News Today’s multimedia associate, Price Wooldridge, discusses how up to 100 free Zolgensma treatments are going to go out worldwide in 2020 under an access program. Also, one thing DeAnn Runge struggles with is finding the line between determination and a waste of time. After spending half an hour trying to unplug her iPad, she decided she has better things to do with her time. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
3 Feb 20208min
Adults With SMA Tend To Report Low Prevalence of Non-Motor Symptoms & Reading From the SMA Forums
We discuss a study that finds adults with SMA, tend to report low prevalence of non-motor symptoms & Forums Director Kevin Schaefer reads from a Monday Motivation post in the SMA News Today Forums. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
31 Jan 20205min
Managing Stomach Issues As SMA Patient & Great Conversation in the SMA News Today Forums
Forums Director Kevin Schaefer talks about trying to manage stomach issues as an individual with SMA & as usual there are great conversations going on in the SMA News Today forums, says DeAnn Runge. Discussions range from how you communicate to strangers your vulnerability to germs to talking about subscription boxes breaking up the monotony of winter and more. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
29 Jan 20205min
Regular CSF Exams Are Urged Following Spinraza Treatments & Smart Home Devices
We discuss a study that suggests that regular CSF exams are urged following Spinraza treatments, to screen for injection side effects. Forums moderator DeAnn Runge has an affinity for smart home devices. However because of their price tags she has to evaluate these products and decide which will integrate with the products she already uses and if they’ll enhance her life. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
27 Jan 20208min
Regular CSF Exams Are Urged Following Spinraza Treatments & Smart Home Devices
We discuss a study that suggests that regular CSF exams are urged following Spinraza treatments, to screen for injection side effects. Forums moderator DeAnn Runge has an affinity for smart home devices. However because of their price tags she has to evaluate these products and decide which will integrate with the products she already uses and if they’ll enhance her life. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
27 Jan 20208min
HHS Secretary's Efforts To Cure Rare Diseases & Taking Advantage of New Opportunities
We discuss the HHS Secretary, Alex Azar, touts the White House efforts to cure rare diseases & Forums Director Kevin Schaefer talks about taking advantage of new opportunities when you have SMA. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
24 Jan 20208min
Being Rare and Resilient & No Topic Is Off Limits on The SMA News Today's Forums
Go to our forums: http://bit.ly/forumsflashbriefings Forums Director Kevin Schaefer recounts the story of his adventures in Philadelphia, and talks about what it means to be rare and resilient. Also, on the SMA News Today forums there’s new content posted on a daily basis and virtually no topic is off limits. Recently SPC’s and other options to make going to the bathroom easier were talked about. Other topics included taking advantage of opportunities, the 2020 Cure SMA conference and the International Day of Acceptance.
22 Jan 20207min
#50 - Roundtable Discussion - January 2020
In episode 50, hosts Kevin Schaefer and Michael Morale discuss updates on Roche and Genentech’s experimental therapy risdiplam. Now that this drug is under FDA-approval, we answer questions regarding its potential cost, and what kind of impact it will have on the SMA community. They also talk about two of their recent columns from the main site. The first is about media representation of people with disabilities; and the second, written by parent columnist Michael Casten, is about working through life’s frustrations. Listen here, and share your thoughts in our forums. Links: -News Story: https://smanewstoday.com/2020/01/15/roche-starts-global-early-access-program-for-sma-therapy-risdiplam-in-europe/ -Kevin’s Column: https://smanewstoday.com/2020/01/14/media-disability-representation-storytelling-comics/ -Michael Casten’s Column: https://smanewstoday.com/2020/01/15/frustrations-life-dog/
21 Jan 202035min
