SMA News & Perspectives

Forums Director Kevin Schaefer shares some of his tips for self-isolation during the Coronavirus (COVID-19) outbreak. SMA News Today’s multimedia associate, Price Wooldridge, discusses how the synaptotagmin 13 (SYT13) gene can prolong life in mice with ALS and SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

One of the main topics of conversation over on the forums is COVID-19. Posted are links to resources and tips on staying productive during lockdown. DeAnn also discusses where to find the latest SMA News Today columns. Also, forums Director Kevin Schaefer shares his thoughts on staying cautious during the Coronavirus pandemic, and how he’s protecting himself. Are you interested in learning more ab...

In episode 54, Michael and I discuss the global outbreak of Coronavirus (COVID-19). We share our tips for how others in the SMA community can best protect themselves, as well as their caregivers. Please note that this is not professional medical advice. We’re just sharing our thoughts and opinions. How are you all doing? Any tips for self-isolation?

Anticipation is growing as Roche/Genentech's treatment risdiplam, the first oral medication to treat SMA, is under FDA review. SMA News Today’s multimedia associate, Price Wooldridge, discusses how the lack of SMA protein may also directly contribute to SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s Senior Director of Multichannel Content, Michael Morale, discusses the importance of physical therapy, and how physical therapy can not only help avoid problems, but also correct some problems that have already occurred. Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how the Institute for Gene Therapies seeks to modernize the regulatory reimbursement fram...

In the forums a topic of discussion has been the thing that’s on everyone’s mind, the Novel Coronavirus, also known as COVID19. Spinraza has also been discussed. Other topics include bloating, SPC’s and being spontaneous.

Spontaneity can be difficult when you have SMA. Sometimes it even takes planning. Forums moderator DeAnn Runge shares how she does it and is looking for advice on how to be even more spontaneous. SMA News Today’s multimedia associate, Price Wooldridge, discusses how body composition may be a biomarker of motor function in SMA patients. Are you interested in learning more about spinal muscular atro...

Forums Director Kevin Schaefer talks about maintaining long-distance friendships, particularly with people in the SMA community. SMA News Today’s multimedia associate, Price Wooldridge, details an MDA executive’s discussion of gene therapies, SMN2 gene modifiers, and the challenges in treating SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smane...

February 29th was recognized as Rare Disease Day across the world. SMA News Today columnists shared what this day meant to them. A social media campaign was also successful in bringing awareness to rare diseases and celebrating #WhatMakesMeRareSMA. Also, forums Director Kevin Schaefer shares how music plays a big part in his life in his latest column.

In episode 53, host Kevin Schaefer interviews our very own Alyssa Silva. Alyssa is from Cumberland, Rhode Island, and she is a columnist and forums moderator here at SMA News Today. She’s also the founder of the nonprofit organization Working on Walking. Throughout this conversation, she talks about growing up with SMA Type 1, her college experiences, writing, and more. Are you interested in learn...

When it comes to public interactions with people who have disabilities there are no set rules. As someone who has a disability, DeAnn shares her thoughts on this topic. Also, listen to SMA News Today’s multimedia associate, Price Wooldridge, discuss how the Muscular Dystrophy Association leads in helping others with care centers, research, and a summer camp. Are you interested in learning more abo...

Forums Director Kevin Schaefer talks about his most recent Spinraza injection and SMA News Today’s multimedia associate, Price Wooldridge, discusses the Risdiplam success in treating SMA Type 1 babies in the FIREFISH study. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Forums Director Kevin Schaefer talks about the upcoming Rare Disease Day, and what it means to him. Also, DeAnn Runge shares the latest activity going on in the forums. Among the topics being discussed are accessible parking, sleepovers and product reviews.

Having gone through a life threatening ordeal, forums moderator DeAnn Runge knows despite being physically weak she has a great deal of strength. As a reminder she has a little blue notebook. SMA News Today’s multimedia associate, Price Wooldridge, discusses the discovery of a potential new SMA genetic modifier. Are you interested in learning more about spinal muscular atrophy? If so, please visit...

Forums Director Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how a CSF protein profile may help predict Spinraza responses in late-onset SMA patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 Muscul...

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, ple...

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 muscula...

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 in...

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 intere...