SMA News & Perspectives

EMBRACE Trial Supports Spinraza’s Benefits in Broad Range of SMA Patients

15 Feb 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses the EMBRACE Trial which supports Spinraza’s benefits in a broad range of Spinal...

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

12 Feb 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses the National Organization for Rare Disorders (NORD) 6th “state report card”, ...

Rare Disease Groups, Pharmas Join SMA Europe Push for Newborn Screening

10 Feb 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses rare disease groups and pharmaceutical companies, joining SMA Europe in a push fo...

Motor Function, Breathing Important in Choosing Treatment

08 Feb 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses improvement in motor function, breathing, and ease of administration are importan...

More Severe COVID-19 Symptoms Seen in Children with SMA Type 1

05 Feb 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses more severe COVID-19 symptoms being seen in children with Spinal Muscular Atrophy...

Better Ways of Capturing Progression in Types 2 and 3 Identified in Study

03 Feb 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses better ways of capturing progression of motor abilities in Spinal Muscular Atroph...

#75: Alvaro Cheherlian, Founder and CEO of Wrekt Svpply

02 Feb 2021

Contributed by Lukas

In episode 75, host Kevin Schaefer talks with Alvaro Cheherlian from Sylmar, California. Alvaro is the founder and CEO of Wrekt Svpply, a clothing bra...

Cure SMA Booklet Outlines Possible Risks, Benefits of Combining Treatments

01 Feb 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses a Cure SMA booklet which outlines the possible risks and benefits of combining tr...

TOPAZ Trial Results on Muscle Therapy Likely by June, Scholar Rock Says

29 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses the TOPAZ trial results expected in June on a muscle-directed therapy for Spinal ...

Resolutions, Mindsets and Emotions & Transitioning SMA Patients From Older To Newer Wheelchairs

27 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Halsey Blocher, From Where I Sit, “Advice From a Life Coach: Resolut...

Online for 2021, Team Cure SMA Race Series Planning Variety of Events

25 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses the Team Cure SMA endurance race series moving online in the current pandemic, an...

Zolgensma Approved to Treat Young SMA Patients in Canada

22 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses a Spinraza Phase 4 trial to treat children who failed to respond to gene therapy...

Keeping Your Child with SMA in School During the Cold and Flu Season & Soaring With Hope

20 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses strategies to keep your child with Spinal Muscular Atrophy (SMA) in school during...

New Cure SMA Webinar Series to Focus on Health, Wellness & Let's Talk About Sex and SMA

18 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses the Cure SMA three-part webinar series on wellness topics for the Spinal Muscular...

Higher-dose Spinraza Trial Now Enrolling Part B After No Safety Issues Found

15 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses a higher dose Spinraza trial now enrolling Part B after no safety issues were fou...

This Year, I Want to Be Brave & The Challenges That Come With Pursuing Independence

13 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Brianna Albers, The Wolf Finally Frees Itself, “This Year, I Want to ...

Informal SMA Caregivers Surveyed in Europe Report High Daily Burden & Relevant Topics On The Forums

11 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how non-professional caregivers who care for children with Spinal Muscular Atroph...

Zolgensma Linked in 3 Cases to Serious But Treatable Blood Disorder

08 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma is linked in three cases to a serious but treatable blood disorder....

Zolgensma Approved to Treat Young SMA Patients in Canada & Kidney Stone And a Trip To The ER

06 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgensma approval in Canada for the treatment of young Spinal Muscular Atrophy p...

#73: Interview With Tyler Dykema, Artist and Musician with SMA

05 Jan 2021

Contributed by Lukas

In episode 73, host Kevin Schaefer talks with Tyler Dykema from Grand Rapids, Michigan. Tyler is an artist, musician, and punk rock connoisseur who ha...

Paramedian Injection Approach Found to Ease Spinraza Administration & Difficult On Getting Evrysdi

04 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses administering Spinraza (nusinersen) via a paramedian injection to shorten procedu...

Ella Has Fun While Sheltering at Home & Stepping Into a New Me in the Year Ahead

01 Jan 2021

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Michael Casten, “Five Servings of Strength”, Ella Has Fun While She...

Being An Uncle With SMA and How This Role Can Change One's Life

30 Dec 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Michael Casten, “Five Servings of Strength”, Ella Has Made Big Gain...

Smart Tech Is Integral to My Quality of Life & 2020 Highlights

28 Dec 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Brianna Albers, “The Wolf Finally Frees Itself”, Yes, Actually, Sma...

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

25 Dec 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, reads a column by Hasley Blocher, “From Where I Sit”, Rising From the Ashes an Flying W...

Financial Burden of SMA Much Higher Than Other Conditions & The Mental Benefits of Physical Therapy

23 Dec 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses the higher financial burden on Spinal Muscular Atrophy (SMA) patients, compared t...

Measuring Neurological Impact of Polio Proves Useful in SMA, Study Reports

21 Dec 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how measuring the neurological impact of Polio proves useful in studying patients...

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

18 Dec 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses a genetic analysis of families with a member affected by Spinal Muscular Atrophy ...

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

16 Dec 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses a study which finds Zolgensma-associated liver abnormalities are common but manag...

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

15 Dec 2020

Contributed by Lukas

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...

Neurological Alliance Report Calls for Better Treatment, Care for UK Patients

14 Dec 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses a Neurological Alliance report calling for better treatment and care of U.K. pati...

Spinraza Linked to Temporary Abnormalities in Immune Cells in 2 SMA Infants

11 Dec 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza is linked to temporary abornalities in immune cells in two Spinal Mu...

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

09 Dec 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how extensive trial monitoring confirms Evrysdi does not damage vision in childre...

Olesoxime Failed to Benefit SMA Type 2 and 3 Patients, Final Trial Data Show

07 Dec 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how olesoxime failed to benefit Spinal Muscular Atrophy (SMA) Type 2 and 3 patien...

Gene Therapy Given Directly to Spinal Canal Might Be Safer With ‘Silencing’ Step

04 Dec 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how gene therapy, given directly to the spinal canal, might be safer with a “si...

Exploring The Intersection of Identity and SMA

02 Dec 2020

Contributed by Lukas

Forums Director Kevin Schaefer explores the intersection of identity and SMA in his latest column. To learn more about spinal muscular atrophy, visi...

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

01 Dec 2020

Contributed by Lukas

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 t...

Spinraza Shown to Preserve Respiratory Muscle Strength in SMA Type 2 Patients

30 Nov 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study has shown Spinraza preserves respiratory muscle strength in Spinal Mu...

Lung Health Declines in Step With Motor Loss in Types 2 and 3, Study Finds

26 Nov 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how lung health declines in step with motor loss in Spinal Muscular Atrophy (SMA)...

Reflecting On The Insanity of 2020 and The People Who Got Us Through This Year

25 Nov 2020

Contributed by Lukas

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 spina...

Spinraza’s Benefits Mild, Transient in Infant With Severe Type 0 SMA

23 Nov 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses the mild, transient benefits of Spinraza treatment in an infant with severe, Type...

Molecule Similar to Evrysdi But Possibly Safe at Higher Doses Identified

20 Nov 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses a molecule similar to Evrysdi, is possibly safer at higher doses has been identif...

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

18 Nov 2020

Contributed by Lukas

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....

#70 - Discussing the JACO Robotic Arm with Ron Borgschulte

17 Nov 2020

Contributed by Lukas

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...

Muscle MRI Captures Spinraza’s Effects on Tissue Fibers in Type 3 Brothers

16 Nov 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a muscle MRI captures Spinraza’s effects on tissue fibers in two brothers w...

NICE Reviews UK Spinraza Reimbursement for SMA Type 3 Patients Unable to Walk

13 Nov 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s National Institute for Health and Care Excellence (NICE) review of re...

The Importance Of Balance While Maneuvering On Uneven Surfaces For People With SMA

11 Nov 2020

Contributed by Lukas

Forums Director Kevin Schaefer reads from an article on our healthcare professional site, in which a physical therapist talks about the importance of ...

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

09 Nov 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses muscle-directed therapy SRK-015 and improving motor function in Spinal Muscular A...

Evrysdi Approved in Brazil for Spinal Muscular Atrophy (SMA)

06 Nov 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi’s approval in Brazil for Spinal Muscular Atrophy (SMA). Are you intere...

Spending Time In & Out Of You Chair So You Give Your Body The Balance It Requires & Managing Stress

04 Nov 2020

Contributed by Lukas

Forums Director Kevin Schaefer talks about spending time in and out of his chair, in order to give his body the balance it requires. DeAnn Runge talk...

#69 - Interview With Lamondre Pough

03 Nov 2020

Contributed by Lukas

In this episode, host Kevin Schaefer talks with LaMondré Pough from Columbia, South Carolina. Lamondré is a public speaker, consultant, and advocate...

PAN Foundation Offers Financial Help for SMA Treatment & Routine Changes As Winter Sets In

02 Nov 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how people living with Spinal Muscular Atrophy (SMA) can apply for financial help...

Adults With SMA Who Sought Specialty Care After Spinraza Approval May Have More Severe Disease

30 Oct 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses Adults with SMA who have sought specialty care after Spinraza’s approval, may h...

Embracing The Imaginative Spirit of Halloween & Cold Feet, JACO Robotic Arm and Caregivers

28 Oct 2020

Contributed by Lukas

Forums Director Kevin Schaefer reads from one of his older columns about embracing the imaginative spirit of Halloween. Plenty of conversations are h...

‘Think 3 at 3 Months’ Drive Seeks to Raise Awareness of Infant Movement Milestones & PCA Services

26 Oct 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses the “Think 3 at 3 Months” drive, seeking to raise awareness of infant movemen...

SMA Type 3 Adults May Have Issues Regulating Component of Cell’s ‘Skeleton,’ Study Suggests

23 Oct 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA Type 3 adults may have issues regulating a component of cell’s cytoskeleton...

How Memories Of a Dying Shopping Mall Made Kevin Schaefer About Adapting to Change

21 Oct 2020

Contributed by Lukas

Forums Director Kevin Schaefer talks about memories of a dying shopping mall in his hometown, and how it made him think about adapting to change. DeA...

#68 - Getting A New Wheelchair

20 Oct 2020

Contributed by Lukas

In this episode, host Kevin Schaefer talks with DeAnn Runge, vlogger and forum moderator for SMA News Today. DeAnn talks about acquiring her new ser...

4-aminopyridine Fails to Improve Muscle Function in SMA Type 3 Patients & New Service Dog

19 Oct 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses 4-aminopyridine’s failure to improve muscle function in SMA Type 3 patients. D...

SMA Type 1 Infants Treated With Zolgensma Achieving Milestones, Data Show

16 Oct 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA Type 1 infants, treated with Zolgensma, are achieving milestones. Are you in...

Spontaneous Trips, Reading, Socially Distant Celebrations, Delayed Deliveries & More

14 Oct 2020

Contributed by Lukas

Forums Director Kevin Schaefer talks about a spontaneous trip he took on his 26th birthday last year, and the adventures that came from it. A variety...

Infants Receiving Evrysdi Continue to Improve and Achieve Motor Milestones

12 Oct 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses infants who are receiving Evrysdi continue to improve and achieve motor milestone...

Novartis to Open, at FDA Request, New Trial of Zolgensma for Older Patients

09 Oct 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses Novartis opening, at FDA request, a new trial of Zolgensma for older patients. A...

How SMA Affects Your Ability to Draw, Treasuring Little Things & Setting Boundaries With Caregivers

07 Oct 2020

Contributed by Lukas

Forums Director Kevin Schaefer talks about how SMA has affected his ability to draw, and about treasuring the little things. Recent topics being disc...

#67 - Interview With Maylan Chavez

06 Oct 2020

Contributed by Lukas

In episode 67, host Kevin Schaefer talks with Maylan Chavez from Miami, Florida. Maylan is an ambassador for the company EyeGaze Inc., which develops ...

Spinraza Leads To Motor Gains Over Time in SMA Type 3 Adults

05 Oct 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza leads to motor gains over time in Spinal Muscular Atrophy (SMA) Type...

GridPad Trilogy Communication Device Aids People With Speech And Motor Disorders Who Have SMA

02 Oct 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses the GridPad Trilogy communication device, which aids people with speech and motor...

Kevin Schaefer Talks About How The Past Few Months Have Been And How He’s Adapted to a New Normal

30 Sep 2020

Contributed by Lukas

Forums Director Kevin Schaefer talks about how the past few months have been for him, and how he’s adapted to a new normal. To learn more about spi...

Electric Bike Technologies Donates Liberty Trikes To Aid The Mobility Of Children With SMA

28 Sep 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses the Electric Bike Technologies company donating Liberty Trikes to aid the mobilit...

AveXis Now Known as Novartis Gene Therapies, Focus of Continuing Work

25 Sep 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses AveXis, now known as Novartis Gene Therapies, focusing on continued work with gen...

Eye Doctor Appointment Adventures, How Everything Takes Extra Effort In The World Of SMA & More

23 Sep 2020

Contributed by Lukas

Forums Director Kevin Schaefer recaps his adventures during a recent eye doctor appointment, and talks about how everything takes extra effort in the ...

NICE Widens Its Zolgensma Appraisal Due to European Marketing Authorization

21 Sep 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s National Institute for Health and Care Excellence (NICE) widening its...

Activities Underway for Newborn Screening Awareness Month

18 Sep 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses the activities currently underway for Newborn Screening Awareness Month. Are you...

Experiences With a BiPAP Machine And The Pros And Cons of Wearing One & Wardrobe Challenges

16 Sep 2020

Contributed by Lukas

Forums Director Kevin Schaefer talks about his experiences with a BiPAP machine, and the pros and cons of wearing one. DeAnn shares Halsey’s latest...

#66: Talking About Evrysdi, SRK-015, and Recent Columns

15 Sep 2020

Contributed by Lukas

In episode 66, hosts Kevin Schaefer and Michael Morale discuss news regarding the FDA-approved treatment Evrysdi, and Michael’s decision to switch t...

#65 - Interview With Dwight Reed

01 Sep 2020

Contributed by Lukas

In episode 65, host Kevin Schaefer talks with Dwight Reed from Virginia. Dwight is a father of three, and his youngest daughter has SMA Type 1. Dwight...

#64 - Roundtable Podcast Discussion on Technology

24 Aug 2020

Contributed by Lukas

In this episode, members of the SMA News Today team discuss assistive technologies that have had a unique impact on their lives. These technologies in...

#62 - Interview With Shawn Stewart

21 Jul 2020

Contributed by Lukas

In episode 62, host Kevin Schaefer talks with Shawn Stewart from southern California. Shawn has his own tax service business, and he has SMA Type 3. H...

#61 - Recapping the 2020 Cure SMA Virtual Conference

07 Jul 2020

Contributed by Lukas

In episode 61, the SMA News Today team shares some highlights from the 2020 virtual Cure SMA conference. They discuss webinar presentations, research ...

The First Virtual Cure SMA Conference, Creating a Sanctuary, Scoliosis & Epic Wheelchair Stories

17 Jun 2020

Contributed by Lukas

Forums Director Kevin Schaefer talks about taking part in the first virtual Cure SMA conference. This week’s forum topics include DeAnn’s latest ...

#60 - Interview With George Corbin

16 Jun 2020

Contributed by Lukas

In episode 60, host Kevin Schaefer interviews George Corbin from Neptune, New Jersey. George is a graduate of Temple University, and he has SMA type 3...

How Heart Problems in SMA May Be Tied To Calcium Dysregulation

15 Jun 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how heart problems in SMA may be tied to calcium dysregulation. Forums moderator...

SHINE Study Data Finds Spinraza Shows Sustained Efficacy Over Years of Use

12 Jun 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses the SHINE study data showing Spinraza has sustained efficacy. In Brianna Albers’...

Cure SMA Conference Going Virtual in 2020 & Tips On Purchasing A New Electric Wheelchair

10 Jun 2020

Contributed by Lukas

Forums Director Kevin Schaefer talks about celebrating six years with his caregiver Randy. With the Cure SMA Conference going virtual this year it’...

Feeding Issues Are Still Common Among SMA Type 1 Infants, Despite New Therapy Options

08 Jun 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how feeding issues still are common among SMA Type 1 infants, despite new therapy...

Real-World Study Shows That Spinraza Meets Most Therapeutic Expectations of Adult SMA Patients

05 Jun 2020

Contributed by Lukas

SMA News Today’s, Senior Director of Multichannel Content, Michael Morale, discusses a real-world study that shows that Spinraza meets most therapeu...

#59 - A Conversation with Brianna Albers

04 Jun 2020

Contributed by Lukas

In episode 59, host Kevin Schaefer talks with our very own columnist Brianna Albers. Brianna talks about quarantine, values-based living, and how she'...

Tips For Staying Active and Mentally Engaged This Summer & How The JACO Robotic Arm Opens Doors

03 Jun 2020

Contributed by Lukas

Forums Director Kevin Schaefer shares some tips for staying active and mentally engaged this summer, while still remaining in self-isolation. A hot t...

Study Finds Respiratory Weakness in SMA is Most Pronounced in Childhood & Treatment Options for SMA

01 Jun 2020

Contributed by Lukas

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study finds respiratory weakness in SMA is most pronounced in childhood. Si...

SMA Treatment and Screening Programs “Essential” in The Covid-19 Pandemic

29 May 2020

Contributed by Lukas

Forums Director Kevin Schaefer talks about how video games can benefit rare disease patients in hospitals right now, including those with neuromuscula...

Risdiplam, Switching Treatments & Difficult Breathing While Wearing Masks

27 May 2020

Contributed by Lukas

Forums Director Kevin Schaefer talks about the investigational therapy risdiplam, and whether or not he would consider switching treatments. Masks ar...

Study Addresses Dilemmas Regarding Newborn Screening and SMA Treatment

25 May 2020

Contributed by Lukas

Despite not being able to shop in person, DeAnn Runge finds a way to replace her television that decided to quit working at the most inopportune time....

How a Family and Doctor “Partnership” That Led to a Baby’s Spinraza Treatment

22 May 2020

Contributed by Lukas

Forums Director Kevin Schaefer reads the latest post from caregiver columnist Michael Casten. SMA News Today’s multimedia associate, Price Wooldrid...

Fatigue Experienced Prior Spinraza Injection & Cure SMA COVID-19 Care Package

20 May 2020

Contributed by Lukas

Forums Director Kevin Schaefer talks about the fatigue he experiences prior to a Spinraza injection. DeAnn’s latest vlog has been posted where she ...

#58 - How COVID-19 Affects Spinraza and Other Medical Appointments

19 May 2020

Contributed by Lukas

In episode 58, the SMA News Today team talks about how the COVID-19 pandemic is impacting their Spinraza appointments and other medical procedures. Ho...

How Lung Ultrasound is a Reliable Option to Chest X-rays for Monitoring Children

18 May 2020

Contributed by Lukas

Forums moderator DeAnn Runge shares how she’s navigating the current world situation and how resuming operations in the next phase poses new challen...

Study Suggests The Interplay of Motor Neurons and Glial Cells is At The Root of SMA

15 May 2020

Contributed by Lukas

Forums Director Kevin Schaefer reads from Brianna Albers’ latest column “How Do We Maintain Post-traumatic Growth?” SMA News Today’s multimed...

Differences Between Risdiplam and SRK-015, Dealing With Anxiety & Taking Things For Granted

13 May 2020

Contributed by Lukas

In the forums Michael Morale’s latest video, which points out the differences between risdiplam and SRK-015 as potential SMA treatments, has been a ...

How Risdiplam Defies SMA “Natural History” in Type 1 Infants, According to FIREFISH Study Data

11 May 2020

Contributed by Lukas

Forums moderator DeAnn Runge shares her experience of getting Spinraza amidst the COVID pandemic. SMA News Today’s multimedia associate, Price Wool...

How Growth-Friendly Spinal Implants May Help SMA Children Before Fusion Surgery

08 May 2020

Contributed by Lukas

Forums Director Kevin Schaefer talks about an anthology of essays from the New York Times series on disability. SMA News Today’s multimedia associa...