SMA News Today

SMA News & Perspectives

Health EN ↓ 445 episodes

Daily, digital coverage of the latest SMA news and perspectives.

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SMA News Today

Episodes

Smart Tech Is Integral to My Quality of Life & 2020 Highlights 28.12.2020 8:46

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Brianna Albers, “The Wolf Finally Frees Itself”, Yes, Actually, Smart Tech Is Integral to My Quality of Life. SMA News Today’s forums moderator, DeAnn Runge, looks back at 2020, and shares some memorable highlights despite a pandemic throwing a wrench into everything. She encourages everyone to go after their goals and dr...

Rising From the Ashes and Flying With Broken Wings & Finding My Voice In the Disability Community 25.12.2020 7:19

SMA News Today’s multimedia associate, Price Wooldridge, reads a column by Hasley Blocher, “From Where I Sit”, Rising From the Ashes an Flying With Broken Wings. SMA News Today’s forums moderator, DeAnn Runge shares excerpts from Katie Napiwocki's recent column, Finding My Voice within the Disability Community, where she explores the concept of disability and how it relates to her life. ==========...

Financial Burden of SMA Much Higher Than Other Conditions & The Mental Benefits of Physical Therapy 23.12.2020 12:14

SMA News Today’s multimedia associate, Price Wooldridge, discusses the higher financial burden on Spinal Muscular Atrophy (SMA) patients, compared to other conditions. SMA News Today’s Columnist and Forums Director, Kevin Schaefer, reads from an article on our HCP site about the mental and emotional benefits of physical therapy. ================================ To learn more about Evrysdi, please...

Measuring Neurological Impact of Polio Proves Useful in SMA, Study Reports 21.12.2020 10:46

SMA News Today’s multimedia associate, Price Wooldridge, discusses how measuring the neurological impact of Polio proves useful in studying patients with Spinal Muscular Atrophy (SMA). SMA News Today’s forums moderator, DeAnn Runge, talks about an article that discusses the Paramedian approach for Spinraza injections. The option of Everysdi is also a hot topic. Since gatherings are out this holida...

Genetic Analysis of Families Finds Novel Mutations in SMA & The Lack Of Privacy When Living With SMA 18.12.2020 10:24

SMA News Today’s multimedia associate, Price Wooldridge, discusses a genetic analysis of families with a member affected by Spinal Muscular Atrophy (SMA) which finds novel mutations in SMA patients. SMA News Today’s forums moderator, DeAnn Runge shares her experiences with the lack of privacy that can be an issue when you have SMA. ================================ To learn more about Evrysdi, plea...

Zolgensma-associated Liver Abnormalities Common but Manageable & I’m Disappointed, and That’s OK 16.12.2020 11:44

SMA News Today’s multimedia associate, Price Wooldridge, discusses a study which finds Zolgensma-associated liver abnormalities are common but manageable in children with Spinal Muscular Atrophy (SMA). SMA News Today’s Columnist and Forums Director, Kevin Schaefer, reads from Brianna Albers’ column about facing disappointment during the holiday season. ================================ To learn mor...

#72: Evrysdi, Physical and Mental Health, and Highlights of 2020 15.12.2020 47:31

In episode 72, Kevin Schaefer and Michael Morale reflect on the craziness of 2020, and they highlight some of the key pieces of content SMA News Today created this year. They also discuss Michael’s ongoing Evrysdi treatments, and share tips for improving one’s mental and physical health. ================================ Link to DeAnn’s videos: https://www.youtube.com/playlist?list=PLtRCVbeiSodnTNo...

Neurological Alliance Report Calls for Better Treatment, Care for UK Patients 14.12.2020 7:39

SMA News Today’s multimedia associate, Price Wooldridge, discusses a Neurological Alliance report calling for better treatment and care of U.K. patients living with rare neurological conditions such as Spinal Muscular Atrophy (SMA). SMA News Today’s forums moderator, DeAnn Runge discusses an article written by Alyssa Silva. She talks about how Alyssa had doubts about her ability to start a small b...

Spinraza Linked to Temporary Abnormalities in Immune Cells in 2 SMA Infants 11.12.2020 9:04

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza is linked to temporary abornalities in immune cells in two Spinal Muscular Atrophy (SMA) infants. SMA News Today’s forums moderator, DeAnn Runge talks about how the process is going adjusting to her new wheelchair. ================================ To learn more about Evrysdi, please visit www. ApprovedForSMA.com ======...

Extensive Trial Monitoring Confirms Evrysdi Does Not Damage Vision & The Series "Boy Meets World" 09.12.2020 11:34

SMA News Today’s multimedia associate, Price Wooldridge, discusses how extensive trial monitoring confirms Evrysdi does not damage vision in children or adults with Spinal Muscular Atrophy (SMA). SMA News Today’s Forums Director, Kevin Schaefer, talks about how the series “Boy Meets World” impacted him, and the correlation between creativity and SMA. ================================ To learn more...

Olesoxime Failed to Benefit SMA Type 2 and 3 Patients, Final Trial Data Show 07.12.2020 9:12

SMA News Today’s multimedia associate, Price Wooldridge, discusses how olesoxime failed to benefit Spinal Muscular Atrophy (SMA) Type 2 and 3 patients in a final trial. SMA News Today’s forums moderator, DeAnn Runge discusses recent topics in the SMA News Today forums. A big topic of course is COVID. From dealing with the effects to anticipating the vaccine many discussions revolve around it. In o...

Gene Therapy Given Directly to Spinal Canal Might Be Safer With ‘Silencing’ Step 04.12.2020 10:27

SMA News Today’s multimedia associate, Price Wooldridge, discusses how gene therapy, given directly to the spinal canal, might be safer with a “silencing” step. SMA News Today’s forums moderator, DeAnn Runge talks about everything shes had to get caught up with after quarantine. ================================ To learn more about Evrysdi, please visit http://www. ApprovedForSMA.com ==============...

Exploring The Intersection of Identity and SMA 02.12.2020 4:11

Forums Director Kevin Schaefer explores the intersection of identity and SMA in his latest column. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.

#71: Interview with Kristen Resendez, SMA Parent and Advocate 01.12.2020 40:30

In episode 71, host Kevin Schaefer talks with Kristen Resendez from Harlingen, Texas. Kristen’s son, Jack, has SMA, and she is an active member of the SMA community. During this conversation, she talks about life since Jack’s diagnosis, medical advancements, and advice for other parents. ================================ To learn more about Evrysdi, please visit www. ApprovedForSMA.com ============...

Spinraza Shown to Preserve Respiratory Muscle Strength in SMA Type 2 Patients 30.11.2020 5:47

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study has shown Spinraza preserves respiratory muscle strength in Spinal Muscular Atrophy (SMA) Type 2 patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Lung Health Declines in Step With Motor Loss in Types 2 and 3, Study Finds 26.11.2020 5:34

SMA News Today’s multimedia associate, Price Wooldridge, discusses how lung health declines in step with motor loss in Spinal Muscular Atrophy (SMA) Types 2 and 3. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Reflecting On The Insanity of 2020 and The People Who Got Us Through This Year 25.11.2020 5:01

Forums Director Kevin Schaefer reflects on the insanity of 2020, and talks about the people who got him through this year. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.

Spinraza’s Benefits Mild, Transient in Infant With Severe Type 0 SMA 23.11.2020 5:21

SMA News Today’s multimedia associate, Price Wooldridge, discusses the mild, transient benefits of Spinraza treatment in an infant with severe, Type 0, Spinal Muscular Atrophy (SMA). Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Molecule Similar to Evrysdi But Possibly Safe at Higher Doses Identified 20.11.2020 7:42

SMA News Today’s multimedia associate, Price Wooldridge, discusses a molecule similar to Evrysdi, is possibly safer at higher doses has been identified. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

How An Urology Appointment Turned Into A Fiasco & Typing Strategies, Vitamin D and Friendsgiving 18.11.2020 6:22

Forums Director Kevin Schaefer talks about how a recent urology appointment turned into a bit of a fiasco. He describes this as an “SMA kind of day.” Also, SMA News Today not only brings you the latest news as it relates to SMA, they also have great content in regards to living with it. DeAnn Runge gives a brief synopsis of Katie Napiwocki’s latest column as well as highlights recent forum topics...

#70 - Discussing the JACO Robotic Arm with Ron Borgschulte 17.11.2020 34:54

In episode 70, host Kevin Schaefer and Michael Morale talk with entrepreneur Ron Borgschulte. Ron is the owner of Partners in Medicine, a company that works with Kinova Robotics to distribute assistive technologies to people in the United States. Since working with Kinova, Ron has played an important role in helping clients acquire devices like the JACO robotic arm. He talks about his experiences...

Muscle MRI Captures Spinraza’s Effects on Tissue Fibers in Type 3 Brothers 16.11.2020 8:43

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a muscle MRI captures Spinraza’s effects on tissue fibers in two brothers with Type 3 Spinal Muscular Atrophy (SMA). DeAnn Runge talks about the frustrations that come along with adjusting to a new wheelchair. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

NICE Reviews UK Spinraza Reimbursement for SMA Type 3 Patients Unable to Walk 13.11.2020 4:15

SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s National Institute for Health and Care Excellence (NICE) review of reimbursement for SMA Type 3 patients who are unable to walk. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

The Importance Of Balance While Maneuvering On Uneven Surfaces For People With SMA 11.11.2020 6:43

Forums Director Kevin Schaefer reads from an article on our healthcare professional site, in which a physical therapist talks about the importance of balance while maneuvering on uneven surfaces for people with SMA. In the forums Evrysdi remains a hot topic from the need to confirm genetic SMA results to switching from Spinraza to Everysdi. Other topics include celebrating the holidays differently...

Muscle-directed Therapy SRK-015 Improves Motor Function in SMA Types 2 and 3 & Hibernation in Winter 09.11.2020 12:09

SMA News Today’s multimedia associate, Price Wooldridge, discusses muscle-directed therapy SRK-015 and improving motor function in Spinal Muscular Atrophy (SMA) Types 2 and 3. DeAnn Runge discusses how hibernation is getting old, yet she’s struggling deciding what risks are safe enough for her take. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://sman...