Sma News & Perspectives

Forums Director Kevin Schaefer reads from this week’s motivational post in the SMA News Today forums and we're also happy to welcome Katie Napiwocki back into the rotation of SMA News Today columnists! In her latest column, Peering Through the Fog of Fear, she explains why she took a break from writing about SMA and how she came to the decision to stop her Spinraza treatments.

In episode 52, host Kevin Schaefer talks with Luisa Palazola, a Community Manager for SMA News Today. Luisa is from Memphis, Tennessee, and she has another rare genetic condition called cystic fibrosis. During this conversation, she talks about her story and advocacy work, what she’s learned about SMA through her work here, and the upcoming event Rare Disease Day. To learn more about Spinal Muscular Atrophy, visit www.smanewstoday.com.

Finding the balance between living cautiously and fearfully can be challenging. Forums moderator DeAnn Runge shares how she navigates that delicate balance. Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how magnetic rods may be an alternative treatment to correct scoliosis in children with SMA. 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 an early access program from Roche for SMA therapy Risdiplam in Europe and forums Director Kevin Schaefer talks about forming friendships with his caregivers, and why he thinks this is important. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Some recent topics being discussed on the forums include accessible travel and becoming friends with your caregivers. Also, Dose of DeAnn has a new episode where she collaborates with a community member to talk about the importance of exercise, and forums Director Kevin Schaefer talks about his time working for his college student newspaper. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses a new treatment algorithm for SMA infants diagnosed via vital newborn screening. Also, for those with mobility issues one of the most difficult aspects of life can be going to the bathroom. Options to make it easier do exist. A couple options that can be discussed with a doctor are a suprapubic catheter or a Mitrofanoff. 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 how the ZPR1 protein may be a new potential therapeutic target for SMA. Also, Forums Director Kevin Schaefer talks about an NBC pilot, in which one of the main characters is a kid with SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about embracing the power of his voice in his latest column. Also, every family goes through their share of triumphs and tribulations. In Michael Casten’s latest column he reflects on their most recent struggles as a family. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

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