Extensive Trial Monitoring Confirms Evrysdi Does Not Damage Vision & The Series "Boy Meets World"
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...
12m Dec 09, 2020
12m
Olesoxime Failed to Benefit SMA Type 2 and 3 Patients, Final Trial Data Show
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. ...
9m Dec 07, 2020
9m
Gene Therapy Given Directly to Spinal Canal Might Be Safer With ‘Silencing’ Step
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 ========...
10m Dec 04, 2020
10m
Exploring The Intersection of Identity and SMA
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.
4m Dec 02, 2020
4m
#71: Interview with Kristen Resendez, SMA Parent and Advocate
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 =======...
40m Dec 01, 2020
40m
Spinraza Shown to Preserve Respiratory Muscle Strength in SMA Type 2 Patients
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/
6m Nov 30, 2020
6m
Lung Health Declines in Step With Motor Loss in Types 2 and 3, Study Finds
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/
6m Nov 26, 2020
6m
Reflecting On The Insanity of 2020 and The People Who Got Us Through This Year
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.
5m Nov 25, 2020
5m
Spinraza’s Benefits Mild, Transient in Infant With Severe Type 0 SMA
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/
5m Nov 23, 2020
5m
Molecule Similar to Evrysdi But Possibly Safe at Higher Doses Identified
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/
8m Nov 20, 2020
8m
How An Urology Appointment Turned Into A Fiasco & Typing Strategies, Vitamin D and Friendsgiving
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 top...
6m Nov 18, 2020
6m
#70 - Discussing the JACO Robotic Arm with Ron Borgschulte
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 experienc...
35m Nov 17, 2020
35m
Muscle MRI Captures Spinraza’s Effects on Tissue Fibers in Type 3 Brothers
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/
9m Nov 16, 2020
9m
NICE Reviews UK Spinraza Reimbursement for SMA Type 3 Patients Unable to Walk
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/
4m Nov 13, 2020
4m
The Importance Of Balance While Maneuvering On Uneven Surfaces For People With SMA
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 differe...
7m Nov 11, 2020
7m
Muscle-directed Therapy SRK-015 Improves Motor Function in SMA Types 2 and 3 & Hibernation in Winter
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:/...
12m Nov 09, 2020
12m
Evrysdi Approved in Brazil for Spinal Muscular Atrophy (SMA)
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi’s approval in Brazil for Spinal Muscular Atrophy (SMA). Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6m Nov 06, 2020
6m
Spending Time In & Out Of You Chair So You Give Your Body The Balance It Requires & Managing Stress
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 talks about a podcast she did with Kevin Schaefer as well as shares the latest forum topics. Among them include managing stress, pet dilemmas and beach products. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
7m Nov 04, 2020
7m
#69 - Interview With Lamondre Pough
In this episode, host Kevin Schaefer talks with LaMondré Pough from Columbia, South Carolina. Lamondré is a public speaker, consultant, and advocate for people with disabilities. He currently serves as the CSO for Ruh Global Impact. Listen to LaMondré talk about his education and family life, career path, and where he got the nickname “Bubba.” ================================ Link to LaMondré...
48m Nov 03, 2020
48m
PAN Foundation Offers Financial Help for SMA Treatment & Routine Changes As Winter Sets In
SMA News Today’s multimedia associate, Price Wooldridge, discusses how people living with Spinal Muscular Atrophy (SMA) can apply for financial help for treatment to the PAN Foundation. DeAnn Runge talks about what changes she makes to her routine as winter sets in. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6m Nov 02, 2020
6m
Adults With SMA Who Sought Specialty Care After Spinraza Approval May Have More Severe Disease
SMA News Today’s multimedia associate, Price Wooldridge, discusses Adults with SMA who have sought specialty care after Spinraza’s approval, may have more severe disease. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7m Oct 30, 2020
7m
Embracing The Imaginative Spirit of Halloween & Cold Feet, JACO Robotic Arm and Caregivers
Forums Director Kevin Schaefer reads from one of his older columns about embracing the imaginative spirit of Halloween. Plenty of conversations are happening in the forums. In her recent column Brianna Albers shares her feelings about insurance denying her quest for a JACO Robotic Arm. Several topics have revolved around caregivers. Cold feet, in the literal and figurative sense are also among...
7m Oct 28, 2020
7m
‘Think 3 at 3 Months’ Drive Seeks to Raise Awareness of Infant Movement Milestones & PCA Services
SMA News Today’s multimedia associate, Price Wooldridge, discusses the “Think 3 at 3 Months” drive, seeking to raise awareness of infant movement milestones that, if missed, could mean Spinal Muscular Atrophy (SMA) or other neuromuscular conditions. DeAnn Runge talks about the difficulties of navigating the healthcare system to obtain PCA services. She’s looking into Consumer-Directed Communit...
7m Oct 26, 2020
7m
SMA Type 3 Adults May Have Issues Regulating Component of Cell’s ‘Skeleton,’ Study Suggests
SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA Type 3 adults may have issues regulating a component of cell’s cytoskeleton, according to a study. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6m Oct 23, 2020
6m
How Memories Of a Dying Shopping Mall Made Kevin Schaefer About Adapting to Change
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. DeAnn Runge shares the latest column by Brianna Albers, The Evrysdi Chronicles: Waiting for a Diagnosis, where she writes about her frustrating neurology appointment. To learn more about spinal muscular atrophy, visit our website at http://www.smane...
10m Oct 21, 2020
10m
# 68 - October Roundtable Discussion
In this episode, host Kevin Schaefer talks with DeAnn Runge, vlogger and forum moderator for SMA News Today. DeAnn talks about acquiring her new service dog, Horton, and adapting to life with him. She also discusses testing out a JACO robotic arm, and getting a new wheelchair. Finally, Kevin and DeAnn chat about a few recent columns from our main website. ================================ To ...
47m Oct 20, 2020
47m
4-aminopyridine Fails to Improve Muscle Function in SMA Type 3 Patients & New Service Dog
SMA News Today’s multimedia associate, Price Wooldridge, discusses 4-aminopyridine’s failure to improve muscle function in SMA Type 3 patients. DeAnn Runge talks about how her new service dog Horton is adjusting to life in Minnesota. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
9m Oct 19, 2020
9m
SMA Type 1 Infants Treated With Zolgensma Achieving Milestones, Data Show
SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA Type 1 infants, treated with Zolgensma, are achieving milestones. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7m Oct 16, 2020
7m
Spontaneous Trips, Reading, Socially Distant Celebrations, Delayed Deliveries & More
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 of topics are being discussed in the forums. Among them include enjoying reading, socially distant celebrations, maskne and delayed deliveries. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
7m Oct 14, 2020
7m
Infants Receiving Evrysdi Continue to Improve and Achieve Motor Milestones
SMA News Today’s multimedia associate, Price Wooldridge, discusses infants who are receiving Evrysdi continue to improve and achieve motor milestones in phase 2 and 3 trial data. In light of National Disability Employment Awareness Month (NDEAM) DeAnn Runge shares her first job experiences and why it’s important to talk about this topic. Are you interested in learning more about spinal muscul...
10m Oct 12, 2020
10m
Novartis to Open, at FDA Request, New Trial of Zolgensma for Older Patients
SMA News Today’s multimedia associate, Price Wooldridge, discusses Novartis opening, at FDA request, a new trial of Zolgensma for older patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7m Oct 09, 2020
7m
How SMA Affects Your Ability to Draw, Treasuring Little Things & Setting Boundaries With Caregivers
Forums Director Kevin Schaefer talks about how SMA has affected his ability to draw, and about treasuring the little things. Recent topics being discussed in the SMA News Today forums include setting boundaries with caregivers, vlogs from DeAnn Runge & Michael Morale as well as reflecting on the changing season. To learn more about spinal muscular atrophy, visit our website at http://www.sman...
6m Oct 07, 2020
6m
#67 - Interview With Maylan Chavez
In episode 67, host Kevin Schaefer talks with Maylan Chavez from Miami, Florida. Maylan is an ambassador for the company EyeGaze Inc., which develops eye tracking technology for people with disabilities. During this interview, Maylan shares her experiences as an adult with SMA Type 2, and offers some advice for others in the community. ================================ To learn more about Evry...
37m Oct 06, 2020
37m
Spinraza Leads To Motor Gains Over Time in SMA Type 3 Adults
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza leads to motor gains over time in Spinal Muscular Atrophy (SMA) Type 3 adults, according to a real-life study. DeAnn Runge talks about meeting her new service dog and what training is like. She also discusses the different types of dog placements that were in her class. Are you interested in learning more about sp...
10m Oct 05, 2020
10m
GridPad Trilogy Communication Device Aids People With Speech And Motor Disorders Who Have SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses the GridPad Trilogy communication device, which aids people with speech and motor disorders who have Spinal Muscular Atrophy (SMA). Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
4m Oct 02, 2020
4m
Kevin Schaefer Talks About How The Past Few Months Have Been And How He’s Adapted to a New Normal
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 spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
3m Sep 30, 2020
3m
Electric Bike Technologies Donates Liberty Trikes To Aid The Mobility Of Children With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Electric Bike Technologies company donating Liberty Trikes to aid the mobility of children with Spinal Muscular Atrophy (SMA) and similar challenges. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6m Sep 28, 2020
6m
AveXis Now Known as Novartis Gene Therapies, Focus of Continuing Work
SMA News Today’s multimedia associate, Price Wooldridge, discusses AveXis, now known as Novartis Gene Therapies, focusing on continued work with genetic diseases. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
4m Sep 25, 2020
4m
Eye Doctor Appointment Adventures, How Everything Takes Extra Effort In The World Of SMA & More
Forums Director Kevin Schaefer recaps his adventures during a recent eye doctor appointment, and talks about how everything takes extra effort in the world of SMA. DeAnn Runge talks about the latest SMA News Today forums topics such as getting a service dog, staying hydrated, preparing for a new wheelchair and more. To learn more about spinal muscular atrophy, visit our website at http://www....
6m Sep 23, 2020
6m
NICE Widens Its Zolgensma Appraisal Due to European Marketing Authorization
SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s National Institute for Health and Care Excellence (NICE) widening its Zolgensma appraisal due to the European marketing authorization. DeAnn Runge shares what it was like to demo a JACO Robotic Arm. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6m Sep 21, 2020
6m
Activities Underway for Newborn Screening Awareness Month
SMA News Today’s multimedia associate, Price Wooldridge, discusses the activities currently underway for Newborn Screening Awareness Month. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
5m Sep 18, 2020
5m
Experiences With a BiPAP Machine And The Pros And Cons of Wearing One & Wardrobe Challenges
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 column that talks about wardrobe challenges. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
8m Sep 16, 2020
8m
#66: Talking About Evrysdi, SRK-015, and Recent Columns
In episode 66, hosts Kevin Schaefer and Michael Morale discuss news regarding the FDA-approved treatment Evrysdi, and Michael’s decision to switch to this therapy. They also talk about the clinical trial drug SRK-015, which is developed by Scholar Rock. Finally, Kevin reads excerpts from some of our recent columns. ================================ To learn more about Evrysdi, please visit htt...
41m Sep 15, 2020
41m
Nerve-Muscle Molecule May Be an SBMA Therapeutic Target & Getting a New Wheelchair and a Service Dog
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a nerve-muscle molecule may be an SBMA therapeutic target. DeAnn Runge talks about being overwhelmed with getting a new wheelchair, a JACO Robotic Arm and a service dog. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
9m Sep 14, 2020
9m
Ohio Study Finds Zolgensma Safe and Effective, Particularly in Younger Infants
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Ohio study which finds Zolgensma safe and effective, particularly in younger infants. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6m Sep 11, 2020
6m
Comparing The Fictional Superhero Team The X-Men To The SMA Community & Getting Back To School
Forums Director Kevin Schaefer compares the fictional superhero team the X-Men to the SMA community in his latest column. Recent forum topics include heading back to school even if that means homeschooling, “bad brain days” and nebulizer routines. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
6m Sep 09, 2020
6m
FDA Grants Rare Pediatric Disease Designation to SRK-015 for SMA & Going to The Bathroom With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA granting “Rare Pediatric Disease” designation to SRK-015 for Spinal Muscular Atrophy (SMA). DeAnn Runge talks about her process of going to the bathroom. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Sep 07, 2020
8m
SMA Registries Offer “Real-World Experience” That Makes The Best Treatment Possible
SMA News Today’s multimedia associate, Price Wooldridge, discusses how SMA registries offer “real-world experience” that makes the best treatment possible. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Sep 04, 2020
8m
A Digestive Dilemma & Some Of The Final Stories Featured in The 31 Days of SMA Campaign
Forums Director Kevin Schaefer provides an update on his digestive dilemma in his latest column. DeAnn Runge shares some of the final stories featured in the 31 Days of SMA campaign. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com
6m Sep 02, 2020
6m
#65 - Interview With Dwight Reed
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 discusses his family life, engaging with the SMA community, treatments, and more. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
28m Sep 01, 2020
28m