Sma News & Perspectives

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.

In episode 47, host Kevin Schaefer talks with James Ian from Los Angeles, California. James is a singer, songwriter, and actor, and he has SMA Type 3. Kevin and James talk about music, living with SMA, and media representation of people with disabilities. Photo cred: Travis Tanner Photography James Ian on Spotify: https://open.spotify.com/artist/0KpC5Kw93tkXOVPpNnVbuG?si=u2Ar4jVKSmyyTFaY_fyauA James Ian Instagram: https://www.instagram.com/jamesianmusic/

In episode 46, hosts Kevin Schaefer and Michael Morale discuss the latest news regarding Roche and Genentech’s experimental therapy Risdiplam. We also talk about AveXis’ decision to put its STRONG trial on temporary hold, and some of our recent columns.

In episode 45, host Kevin Schaefer talks with Jim and Becky Berry from Myrtle Beach, South Carolina. Jim and Becky share their experiences as parents of two sons with SMA, and they talk about the life of their late son Carson.

Forums Director Kevin Schaefer talks about embracing the imaginative spirit of Halloween. Forums moderator DeAnn Runge shares what’s been going on in the forums over the past week. Topics include health, winter activities and even SMA history. Feel free to join in on the conversation. Join our forums: https://smanewstoday.com/forums/register/

Hosts Kevin Schaefer and Michael Morale discuss the latest news regarding SMA therapies Spinraza and Risdiplam, as well as some of our recent columns. Listen here, and share your thoughts in the SMA News Today forums. For information regarding the DEVOTE trial, please click on the following link: https://www.clinicaltrials.gov/ct2/show/NCT04089566?term=NCT04089566&rank=1 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.

SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a study that states that problems with metabolising fat molecules are evident and worrisome in SMA children and Forums Director Kevin Schaefer talks about when people call him “inspirational.”

In episode 43, host Kevin Schaefer interviews Jeff Olander from Raleigh, North Carolina. Jeff is a PhD student at UNC-Chapel Hill, studying physics. He talks in this interview about his education, career goals, and his life with SMA Type 2.

We discuss a Macedonian Gaucher activist, whose publicizing the plight of rare disease patients. Although fall and winter are her least favorite seasons, DeAnn finds being prepared can help the transition. She shares what she does to welcome, or at least tolerate the change of seasons. 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

We discuss how the European Spinraza label was updated to reflect long-term benefits in broad ranges of SMA patients and Community Development Manager Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. 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.

SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a Dutch study that states there is a high probability of scoliosis surgery found for SMA types 1C, and 2. Community Development Manager Kevin Schaefer talks about a new memoir by disability rights activist Keah Brown.

We discuss how Spinraza gives babies with type 1 SMA in North Macedonia hope for a healthy life. Also, SMA News Today’s forums moderator, DeAnn Runge, shares how service dogs were introduced into her life, and how service dog fraud jeopardizes their role. 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.

Community Development Manager Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. We discuss how a phase 2 trial shows presymptomatic Spinraza treatment leads to SMA children reaching otherwise unachievable milestones. 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.