Sma News & Perspectives

In episode 51, I talked with Ryan Manriquez and Nora Zade from Sacramento, California. Ryan is a college student with SMA Type 2, and he and Nora have been dating for several months. Both are sophomores at Folsom Lake College, and they’ll be transferring to UC Davis this fall. Throughout this conversation, they talk about their relationship, college life, and more.

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/

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

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

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

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

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

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.

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/

We discuss a US real-world study, that claims that Spinraza stabilizes or improves motor function in older SMA patients. Also, when you have a disease that’s considered the number one genetic killer of infants, getting old doesn’t cross your mind that often. DeAnn talks about the reality of aging parents and how it’s made her become self-reliant as she’s gotten older. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com

We discuss a study that states how a multidisciplinary approach improves the Spinraza dosing process in SMA patients. Also, Forums Director Kevin Schaefer reads the latest piece by parent columnist Michael Casten. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com

Forums Director Kevin Schaefer talks about the importance of media representation for people with disabilities, and calls for more of it in 2020. Also, great conversations are going on in the forums. Alyssa is adjusting to her new wheelchair. DeAnn is dealing with a caregiver who is under the weather. Other topics include managing caregivers, when kids recognize disability and how humorous interactions can lighten the day. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com

We discuss how targeted genetic screening may be useful in diagnosing patients with SMA-like symptoms. Also, a harmless prank can be fun, but it’s not always easy when you have SMA. With the help of her niece DeAnn pulled a prank on her Mom. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com

We discuss early trial data that shows SRK-015 increases myostatin growth factor levels up to 100-fold in SMA patients & Forums Director Kevin Schaefer reads an excerpt from Alyssa Silva’s latest column. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com

We discuss early trial data that shows SRK-015 increases myostatin growth factor levels up to 100-fold in SMA patients & Forums Director Kevin Schaefer reads an excerpt from Alyssa Silva’s latest column. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com

In her most recent column, I Don’t Need to Win to Be a Winner: Volunteering Is Its Own Reward, Halsey explains how her volunteer efforts have been recognized. Halsey not only works with a great group of people at Turnstone, they acknowledge and support the work she does. Also, Forums Director Kevin Schaefer talks about how having SMA has led to some humorous interactions with people. If you would like more information regarding SMA, please go to www.smanewstoday.com

In episode 49, host Kevin Schaefer interviews Ashley Fox from Southern California. Ashley is currently studying psychology at a community college, and she has SMA type 2. She talks about growing up with SMA, becoming a cheerleader in high school, and recently starting Spinraza. Visit our website: http://smanewstoday.com

We discuss how Asuragen is stating that a new screening kit, quickly and thoroughly analyzes SMN1 and SMN2 genes in the lab. & With all the variables that can come into play getting her Spinraza injection, DeAnn never feels totally at ease. She’s grateful for the opportunity and shares her journey to dose 10. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com

We discuss how AveXis is unaware of the cause of inflammation, that led to the STRONG trial hold of AVXS-101. Forums Director Kevin Schaefer shares some of his highlights from this year. Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.

In episode 48, hosts Kevin Schaefer and Michael Morale discuss the latest news regarding Roche and Genentech’s experimental therapy risdiplam. We also talk with our very own DeAnn Runge. DeAnn discusses the origins of her YouTube series “Dose of DeAnn.” She also explains why she shares her story of living with SMA with others.