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SMA News Today Moderator started the topic Study Finds Respiratory Weakness in SMA is Most Pronounced in Childhood & Treatment Options for SMA in the forum Flash Briefings and Podcasts 2 years, 9 months ago
Since 2016 several treatment options for SMA have become available. Forums moderator DeAnn Runge discusses these options.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study finds respiratory weakness in SMA is most pronounced in c…[Read more]
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SMA News Today Moderator started the topic Opening Doors Using The Jaco Robotic Arm in the forum The SMA News Today YouTube Channel 2 years, 10 months ago
Happy Friday everyone! Hope you’re all doing well.
Check out Ryan’s latest video here. In this episode of Ryan’s Robotics, Ryan demonstrates how he uses his JACO robotic arm to open doors in his house. This is another example of how this device increases Ryan’s independence. Hope you all enj…[Read more]
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SMA News Today Moderator started the topic SMA Treatment and Screening Programs “Essential” in The Covid-19 Pandemic in the forum Flash Briefings and Podcasts 2 years, 10 months ago
Forums Director Kevin Schaefer talks about how video games can benefit rare disease patients in hospitals right now, including those with neuromuscular conditions like SMA.
SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA treatment and screening programs “essential” in the Covid-19 pande…[Read more]
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SMA News Today Moderator started the topic Risdiplam, Switching Treatments & Difficult Breathing While Wearing Masks in the forum Flash Briefings and Podcasts 2 years, 10 months ago
Forums Director Kevin Schaefer talks about the investigational therapy risdiplam, and whether or not he would consider switching treatments.
Masks are a hot topic on the forums. With finding it difficult to breathe through them and some experiencing negative effects from wearing them, forum members are seeking alternatives. Other topics…[Read more]
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SMA News Today Moderator started the topic Study Addresses Dilemmas Regarding Newborn Screening and SMA Treatment in the forum Flash Briefings and Podcasts 2 years, 10 months ago
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.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study addresses dilemmas regarding newborn screening and SMA t…[Read more]
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SMA News Today Moderator started the topic How a Family and Doctor “Partnership” That Led to a Baby’s Spinraza Treatment in the forum Flash Briefings and Podcasts 2 years, 10 months ago
Forums Director Kevin Schaefer reads the latest post from caregiver columnist Michael Casten.
SMA News Today’s multimedia associate, Price Wooldridge, discusses a family and doctor “partnership” that led to a baby’s Spinraza treatme…[Read more]
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SMA News Today Moderator started the topic Fatigue Experienced Prior Spinraza Injection & Cure SMA COVID-19 Care Package in the forum Flash Briefings and Podcasts 2 years, 10 months ago
Forums Director Kevin Schaefer talks about the fatigue he experiences prior to a Spinraza injection.
DeAnn’s latest vlog has been posted where she shows what’s included in the Cure SMA COVID-19 care package. Both Katie Napiwocki and Alyssa Silva have columns being discussed in the forums and the latest roundtable talking about Spinraza dur…[Read more]
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SMA News Today Moderator started the topic How Lung Ultrasound is a Reliable Option to Chest X-rays for Monitoring Children in the forum Flash Briefings and Podcasts 2 years, 10 months ago
Forums moderator DeAnn Runge shares how she’s navigating the current world situation and how resuming operations in the next phase poses new challenges and concerns. SMA News Today’s multimedia associate, Price Wooldridge, discusses how lung ultrasound is a reliable option to chest X-rays for monitoring chil…[Read more]
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SMA News Today Moderator started the topic Study Suggests The Interplay of Motor Neurons and Glial Cells is At The Root of SMA & How to Maintain Post-traumatic Growth in the forum Flash Briefings and Podcasts 2 years, 10 months ago
Forums Director Kevin Schaefer reads from Brianna Albers’ latest column “How Do We Maintain Post-traumatic Growth?”
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study suggests the interplay of motor neurons and Glial cells is at the root of Spinal Muscular Atrophy…[Read more]
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SMA News Today Moderator started the topic Differences Between Risdiplam and SRK-015, Dealing With Anxiety & Taking Things For Granted in the forum Flash Briefings and Podcasts 2 years, 10 months ago
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 topic of conversation. Brianna Alber’s series on dealing with anxiety that comes along with the coronavirus has been a popular topic as well as discussions about what “able-bodied” people take fo…[Read more]
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SMA News Today Moderator started the topic How Risdiplam Defies SMA “Natural History” in Type 1 Infants, According to FIREFISH Study Data in the forum Flash Briefings and Podcasts 2 years, 10 months ago
Forums moderator DeAnn Runge shares her experience of getting Spinraza amidst the COVID pandemic.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Risdiplam defies SMA “natural history” in type 1 infants, according to FIREFISH study data.…[Read more]
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SMA News Today Moderator started the topic How Growth-Friendly Spinal Implants May Help SMA Children Before Fusion Surgery in the forum Flash Briefings and Podcasts 2 years, 10 months ago
Forums Director Kevin Schaefer talks about an anthology of essays from the New York Times series on disability.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how growth-friendly spinal implants may help SMA children before fusion s…[Read more]
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SMA News Today Moderator started the topic How SMA-Related Humor Presents Itself in Unexpected Moments, Fundraising Options & Online Therapy in the forum Flash Briefings and Podcasts 2 years, 10 months ago
Forums Director Kevin Schaefer talks about how SMA-related humor presents itself in unexpected moments. And also, this week the topics included on the forums range from discussing fundraising options in the current environment, using online therapy platforms such as Talkspace and even a book…[Read more]
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SMA News Today Moderator started the topic How Taking Part in Adapted Sports Improves Mental Health in Patients With SMA in the forum Flash Briefings and Podcasts 2 years, 10 months ago
Forums moderator DeAnn Runge discusses how looking at what makes her life easier now determines what would make her life easier moving forward.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how taking part in adapted sports improves mental health in patients with Spinal Muscular Atrophy and other neuromuscular d…[Read more]
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SMA News Today Moderator started the topic Discussing The Lack of Muscle Cell Signaling Which is Seen to Kill Motor Neurons in SMA-LED2 in the forum Flash Briefings and Podcasts 2 years, 11 months ago
SMA News Today’s multimedia associate, Price Wooldridge, discusses the lack of muscle cell signaling which is seen to kill motor neurons in SMA-LED2.
SMA News Today’s Senior Director of Multichannel Content, Michael Morale, talks about how he’s had to trust others to help him during the COVID-19 pande…[Read more]
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SMA News Today Moderator started the topic Mounting a Cell Phone to a Jaco Robotic Arm in the forum The SMA News Today YouTube Channel 2 years, 11 months ago
In this episode of “Ryan’s Robotics”, Ryan demonstrates how he mounted his cell phone to his Jaco Robotic arm. While there are numerous mounts that people can purchase online, Ryan’s suggestions are more cost-efficient and adaptable. Check it out here!
Do you have any questio…[Read more]
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SMA News Today Moderator started the topic Telemedicine, Therapy Platforms, Alternative Exercise Routines & Hospital Preparedness Folders in the forum Flash Briefings and Podcasts 2 years, 11 months ago
Forums Director Kevin Schaefer reads from his latest column about a new at-home exercise routine he’s developed, using his electric ceiling lift.
Also, on our forums over the last week we’ve covered many topics including telemedicine, therapy platforms, alternative exercise routines along with advance directives and hospital pre…[Read more]
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SMA News Today Moderator started the topic Discussing Motor Gains and Safety with Zolgensma’s IT Use in a STRONG Trial in the forum Flash Briefings and Podcasts 2 years, 11 months ago
While thinking about how to navigate the Coronavirus situation, forums moderator DeAnn Runge draws parallels to a family game they played. SMA News Today’s multimedia associate, Price Wooldridge, discusses motor gains and safety with Zolgensma’s IT use in a STRONG tria…[Read more]
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SMA News Today Moderator started the topic First Patient Treated in The Phase 2/3 Trial, Assessing Higher Doses of Spinraza in the forum Flash Briefings and Podcasts 2 years, 11 months ago
Forums Director Kevin Schaefer writes about a new at-home exercise routine he’s developed, using his electric ceiling lift.
SMA News Today’s multimedia associate, Price Wooldridge, discusses the first patient treated in the Phase 2/3 trial, assessing higher doses of Spi…[Read more]
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SMA News Today Moderator started the topic Keeping Busy by Playing Phone Games and Nintendo Switch & Home Exercise Routines and Robotic Assistance Devices in the forum Flash Briefings and Podcasts 2 years, 11 months ago
Forums Director Kevin Schaefer talks about how the pop-culture icon Kevin Smith impacted his life, both as a writer and as a person with a disability.
Also, there have been some recent discussions on the forums about keeping busy by playing phone games and using a Nintendo Switch. Creating at home exercise routines and using robotic…[Read more]
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