New Treatment Algorithm For SMA Infants Via Vital Newborn Screening & Going To The Bathroom
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...
5m Feb 10, 2020
5m
ZPR1 Protein May Be New PotentialTherapeutic Target For SMA & NBC's Pilot Featuring Kid With SMA
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/
5m Feb 07, 2020
5m
Embracing The Power of Your Voice & Struggling As a Family
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/
6m Feb 05, 2020
6m
#51: Interview with Ryan Manriquez and Nora Zade
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.
21m Feb 04, 2020
21m
100 Free Zolgensma Treatments Worldwide in 2020 & Unplugging the iPad, Waste of Time
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 int...
8m Feb 03, 2020
8m
Adults With SMA Tend To Report Low Prevalence of Non-Motor Symptoms & Reading From the SMA Forums
We discuss a study that finds adults with SMA, tend to report low prevalence of non-motor symptoms & Forums Director Kevin Schaefer reads from a Monday Motivation post in the SMA News Today Forums. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
6m Jan 31, 2020
6m
Managing Stomach Issues As SMA Patient & Great Conversation in the SMA News Today Forums
Forums Director Kevin Schaefer talks about trying to manage stomach issues as an individual with SMA & as usual there are great conversations going on in the SMA News Today forums, says DeAnn Runge. Discussions range from how you communicate to strangers your vulnerability to germs to talking about subscription boxes breaking up the monotony of winter and more. Are you interested in learning mo...
6m Jan 29, 2020
6m
Regular CSF Exams Are Urged Following Spinraza Treatments & Smart Home Devices
We discuss a study that suggests that regular CSF exams are urged following Spinraza treatments, to screen for injection side effects. Forums moderator DeAnn Runge has an affinity for smart home devices. However because of their price tags she has to evaluate these products and decide which will integrate with the products she already uses and if they’ll enhance her life. Are you interested in ...
9m Jan 27, 2020
9m
Regular CSF Exams Are Urged Following Spinraza Treatments & Smart Home Devices
We discuss a study that suggests that regular CSF exams are urged following Spinraza treatments, to screen for injection side effects. Forums moderator DeAnn Runge has an affinity for smart home devices. However because of their price tags she has to evaluate these products and decide which will integrate with the products she already uses and if they’ll enhance her life. Are you interested in ...
9m Jan 27, 2020
9m
HHS Secretary's Efforts To Cure Rare Diseases & Taking Advantage of New Opportunities
We discuss the HHS Secretary, Alex Azar, touts the White House efforts to cure rare diseases & Forums Director Kevin Schaefer talks about taking advantage of new opportunities when you have SMA. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
9m Jan 24, 2020
9m
Being Rare and Resilient & No Topic Is Off Limits on The SMA News Today's Forums
Go to our forums: http://bit.ly/forumsflashbriefings Forums Director Kevin Schaefer recounts the story of his adventures in Philadelphia, and talks about what it means to be rare and resilient. Also, on the SMA News Today forums there’s new content posted on a daily basis and virtually no topic is off limits. Recently SPC’s and other options to make going to the bathroom easier were talked abou...
7m Jan 22, 2020
7m
#50 - Roundtable Discussion - January 2020
In episode 50, hosts Kevin Schaefer and Michael Morale discuss updates on Roche and Genentech’s experimental therapy risdiplam. Now that this drug is under FDA-approval, we answer questions regarding its potential cost, and what kind of impact it will have on the SMA community. They also talk about two of their recent columns from the main site. The first is about media representation of people...
35m Jan 21, 2020
35m
Spinraza Stabilizes or Improves Motor Function in Older SMA Patients & The Reality of Aging
We discuss a US real-world study, that claims that Spinraza stabilizes or improves motor function in older SMA patients. Also, when you have a disease that’s considered the number one genetic killer of infants, getting old doesn’t cross your mind that often. DeAnn talks about the reality of aging parents and how it’s made her become self-reliant as she’s gotten older. Are you interested in lear...
8m Jan 20, 2020
8m
Multidisciplinary Approach Improves Spinraza Dosing Process in SMA Patients & Parenting and SMA
We discuss a study that states how a multidisciplinary approach improves the Spinraza dosing process in SMA patients. Also, Forums Director Kevin Schaefer reads the latest piece by parent columnist Michael Casten. Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
9m Jan 17, 2020
9m
Importance of Media Representation for People With Disabilities & Conversations in the SMA Forums
6m Jan 15, 2020
6m
Targeted Genetic Screening Helps Diagnosing Patients With SMA-Like Symptoms & Pranking With SMA
8m Jan 13, 2020
8m
Early Trial Data Shows SRK-015 Increases Myostatin Growth Factor Levels in SMA Patients
7m Jan 10, 2020
7m
Early Trial Data Shows SRK-015 Increases Myostatin Growth Factor Levels in SMA Patients
7m Jan 10, 2020
7m
Volunteering As A Reward & Humorous Interactions With People
6m Jan 08, 2020
6m
#49 - Interview With Ashley Fox
29m Jan 07, 2020
29m
Asuragen States New Screening Kit Analyzes SMN1 and SMN2 Genes in the Lab & Being Grateful
7m Jan 06, 2020
7m
Risdiplam Improves Motor Function for SMA types 2 and 3 Patients & New Year's Resolutions
6m Jan 03, 2020
6m
AveXis Unaware of the Cause of Inflammation that Led to the STRONG Trial Hold & 2019 Highlights
14m Dec 20, 2019
14m
Kevin's JACO robotic arm & Pondering Possibilities of the Future
7m Dec 18, 2019
7m
#48: Roundtable Discussion December 2019
24m Dec 17, 2019
24m
FDA Grants Priority Review For Risdiplam & Going To Concerts
8m Dec 16, 2019
8m
BillionToOne's Prenatal Blood Test Now Available in 4 Countries in Europe & Being Proactive With SMA
7m Dec 13, 2019
7m
Movies That Teach You How To Live With SMA & Forums Recap
8m Dec 11, 2019
8m
Exercise Helps Increasing Functional SMN Protein & Being Sick During Holidays
8m Dec 09, 2019
8m
MRI Fiber Tracking May Be Potential SMA Biomarker for Response to Therapy & Thoughs On Risdiplam
8m Dec 06, 2019
8m
Dealing With Assumptions About Physical Capabilities
4m Dec 05, 2019
4m
#10yearchallenge & Risdiplam Getting Fast Tracked For Approval
8m Dec 04, 2019
8m
#47 - Interview With James Ian
37m Dec 03, 2019
37m
MRI Scans of Facial Nerves Can Help Diagnose SMA & Pets Teach Responsibility
7m Dec 02, 2019
7m
New Potential SMA Therapeutic Target Found In Muscle Cells & Expressing Gratitude
6m Nov 29, 2019
6m
How Rare Disease Family Goes Beyond the SMA Community & Personal Stories About SMA
7m Nov 27, 2019
7m
Study Suggests SMA Patients May Benefit From A Low-Fat Diet & Dealing With Disappointment
8m Nov 25, 2019
8m
SMN Protein Study Emphasises Importance of Early SMA Treatment In Newborn Screening
5m Nov 22, 2019
5m
The Importance of Rejuvenation for People With SMA & The SMA Forums Highlights
6m Nov 20, 2019
6m
#46 Roundtable Discussion - Discussion for November 2019
28m Nov 19, 2019
28m
Study Suggests Spinraza Motor And Lung Functions Is SMA Type 3 Adults & Multitude Of Caregivers
8m Nov 18, 2019
8m
Zolgensma Produces Promising Results In Young Children With Type II SMA & Life Progression
8m Nov 15, 2019
8m
Having a High Quality of Life With SMA & Five Servings of Strength by Michael Casten
6m Nov 13, 2019
6m
Scholar Rock’s Early Data Supports the Development of SRK-015 For SMA Types 2 and 3
8m Nov 11, 2019
8m
Risdiplam Continues to Show Survival and Motor Function Improvements
7m Nov 08, 2019
7m
SMA News And Perspectives 11 - 06 - 19
6m Nov 06, 2019
6m
#45 - Interview With Jim and Becky Berry
42m Nov 05, 2019
42m
#45 - Interview With Jim And Becky Berry
42m Nov 05, 2019
42m
FDA Placed A Partial Hold On STRONG Trial Of AVXS-101 & Binge Watch TV Series
9m Nov 04, 2019
9m
SMA STAT Genetic Test Is Enabling Earlier Diagnosis & Employment and SMA
5m Nov 01, 2019
5m