Muscle and Combo Therapies Likely Next Focus for SMA & DeAnn Runge's 3 Year Journey With Spinraza
SMA News Today’s multimedia associate, Price Wooldridge, discusses the likely next focus of muscle and combo therapies for Spinal Muscular Atrophy (SMA). DeAnn Runge shares her thoughts on her 3 year journey with Spinraza. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
10m Aug 31, 2020
10m
SMA Debate: Might Systemic Treatment Be Best?
SMA News Today’s multimedia associate, Price Wooldridge, discusses the SMA debate: might systemic treatment be best? Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
9m Aug 28, 2020
9m
31 Days of SMA Story: Resilience and SMA
Forums Director Kevin Schaefer reads from a recent 31 Days of SMA story. Contributor Andres Gonzalez focuses on the topic of resilience and SMA. DeAnn Runge summarizes a handful of stories featured in the 31 Days of SMA campaign as well as touches on other interesting forum topics being discussed. To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
6m Aug 26, 2020
6m
Roundtable Podcast Discussion on Technology
In this episode, members of the SMA News Today team discuss assistive technologies that have had a unique impact on their lives. These technologies include electric wheelchairs, Amazon Echo devices, the JACO robotic arm, adaptive vehicles, and more. ================================= To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
46m Aug 24, 2020
46m
61 Year Old With SMA Type 3 Says With Evrysdi “Every Day is Good”
SMA News Today’s multimedia associate, Price Wooldridge, discusses the story from a 61 year old with SMA Type 3, who says, with Evrysdi, “every day is good”. DeAnn Runge talks about putting together a hospital bag to make hospital stays more comfortable. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
11m Aug 24, 2020
11m
Evrysdi and Spinraza Target The SMN2 Gene, But in Different Ways
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi and Spinraza target the SMN2 gene, but in different ways. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
5m Aug 21, 2020
5m
The Joy of Always Learning, Evrysdi (risdiplam) & Two Different Perspectives on Education
Forums Director Kevin Schaefer talks about the joy of always learning in his latest column. On the forums Evrysdi (risdiplam) is still a hot topic. Also, two of the featured 31 Days of SMA have different perspectives on education. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
7m Aug 19, 2020
7m
The Expertise in RNA Biology at The Core of PTC’s Formative Work with Evrysdi
SMA News Today’s multimedia associate, Price Wooldridge, discusses the expertise in RNA biology at the core of PTC’s formative work with Evrysdi. DeAnn Runge talks about the considerations of switching from Spinraza to Evrysdi and how she came to her decision. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
12m Aug 17, 2020
12m
Evrysdi Has Parents “Totally Optimistic” For The Future of Their Boy With SMA Type 2
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi has parents “totally optimistic” for the future of their boy with SMA Type 2. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
11m Aug 14, 2020
11m
Frequently Asked Questions About Evrysdi (Risdiplam) & Great Stories From 31 Days of SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses frequently asked questions about Evrysdi (Risdiplam). Patients needing information can also go online at Evrysdi.com, or call 1-833-EVRYSDI (833-387-9734). The forums are buzzing with the announcement Evrysdi has been approved for the treatment of SMA. Many great stories have also been shared this week during the 31 Days of SM...
12m Aug 12, 2020
12m
FDA Approves Risdiplam, Now Known as Evrysdi, The First Oral Treatment For All SMA Types
SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA approval of risdiplam, now known as Evrysdi, as the first oral treatment for all SMA types. This flash briefing is a summary of the article that was written by SMA News Today. To read the article in its entirety, please click on the following link: https://smanewstoday.com/2020/08/07/fda-approves-evrysdi-risdiplam-first...
8m Aug 10, 2020
8m
Plans Advance for Biomarkers Panel to Assess Drug-induced Skeletal Muscle Injury
SMA News Today’s multimedia associate, Price Wooldridge, discusses plans being advanced for a biomarkers panel to assess drug-induced skeletal muscle injury in SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
5m Aug 07, 2020
5m
#63 - Interview With Hugo Trevino
In episode 63, host Kevin Schaefer talks with Hugo Trevino from Chicago, Illinois. Hugo is a disability advocate and an academic advisor for students with disabilities at the University of Illinois in Chicago, and he has SMA Type 3. Kevin and Hugo talk about advocacy, school experiences, ableism and more. Also, hear the story of how Hugo and his sister had to fight for a ramp so they could get ...
49m Aug 06, 2020
49m
The First Few Days of The 31 Days of SMA Initiative & A Story On Dating and Disability
Forums Director Kevin Schaefer reads from one of the stories from our 31 Days of SMA initiative. This story focuses on dating and disability. Also, DeAnn Runge gives an overview of the first few days of the 31 Days of SMA initiative. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
6m Aug 05, 2020
6m
Greatest Loss of Motor Skills at Ages 5 to 13 In SMA Type 2 Patients & Wheelchair Evaluation
SMA News Today’s multimedia associate, Price Wooldridge, discusses the greatest loss of motor skills at ages 5 to 13 in SMA Type 2 patients. Now that DeAnn Runge had her wheelchair evaluation she has to decide what wheelchair will best suit her needs. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
10m Aug 03, 2020
10m
Biogen is Planning to Launch a First Trial, Testing Spinraza in Children Previously Given Zolgensma
SMA News Today’s multimedia associate, Price Wooldridge, discusses the news Biogen is planning to launch a first trial, testing Spinraza in children previously given Zolgensma. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6m Jul 31, 2020
6m
Thinking Ahead, Disability vs. Disease & Diverse Reading Selections
Forums Director Kevin Schaefer talks about taking on extra responsibilities while his Mom recovers from surgery. Welcome to all of the new forum members. This week on the forums some of the topics being discussed include thinking ahead, disability vs. disease and diverse reading selections. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
6m Jul 29, 2020
6m
Iowa Adds SMA as a Pilot Program For Newborn Screening & DeAnn Runge Got a New Kitten
SMA News Today’s multimedia associate, Price Wooldridge, discusses the news that Iowa adds SMA as a pilot program for newborn screening. With so much going on in the world DeAnn’s welcomed distraction comes in the form of a kitten. She shares how it came into her life at the most appropriate time. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://s...
8m Jul 27, 2020
8m
Spinraza Eases Fatigue In Adults With SMA But That Benefit Wanes
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza eases fatigue in adults with SMA, but that benefit wanes. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6m Jul 24, 2020
6m
Socially Distanced Visits & 31 Days of SMA
Forums Director Kevin Schaefer talks about socially distanced visits with friends and 31 Days of SMA. DeAnn Runge also talks about socially distant visits, reintroducing PCA’s and disability pride month. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
5m Jul 22, 2020
5m
#62 - Interview With Shawn Stewart
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. He discusses growing up with a disability, adult life, and getting married in 2019. Listen here! To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
40m Jul 21, 2020
40m
SMN Protein Levels in Blood May Mark SMA Severity & Disability Pride Month
SMA News Today’s multimedia associate, Price Wooldridge, discusses how SMN protein levels in blood, may mark SMA severity and help guide treatment. For SMA News Today forums moderator DeAnn Runge, Disability Pride month is a time to own your disability and live life to the fullest. She reads an article by Katie Napiwocki which is a prime example of doing just that. Are you interested in learnin...
12m Jul 20, 2020
12m
How New Glia Cell Markers May Provide Insight Into Neuromuscular Diseases, Including SMA and ALS
SMA News Today’s multimedia associate, Price Wooldridge, discusses how new Glia cell markers may provide insight into neuromuscular diseases, including SMA and ALS. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7m Jul 17, 2020
7m
Embracing Disability in Pride Month, Tips to Beat The Summer Heat & Travel and Equipment Rental
Forums Director Kevin Schaefer talks about embracing Disability Pride Month. Summer is well under way and ways to beat the summer heat is a topic of discussion on the SMA forums. Travel and equipment rental is also something being talked about. Are you interested in learning more about spinal muscular atrophy? If so, please visit http://www.smanewstoday.com/
6m Jul 15, 2020
6m
The Significant Limits to Treatment Seen For a Spinal Muscular Atrophy, Type 0, Baby
SMA News Today’s multimedia associate, Price Wooldridge, discusses the significant limits to treatment seen for a Spinal Muscular Atrophy, Type 0, baby. Despite feeling discontent DeAnn shares how she tries to look past what she can't do, focus on what she can and learns to be content with where she’s at. Are you interested in learning more about spinal muscular atrophy? If so, please visit h...
10m Jul 13, 2020
10m
Disparities Found in Parents And Children’s Perceptions of Spinal Muscular Atrophy
SMA News Today’s multimedia associate, Price Wooldridge, discusses disparities found in parents and children’s perceptions of Spinal Muscular Atrophy. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7m Jul 10, 2020
7m
How Having SMA Has Led To Many Positive Interactions With Strangers, Returning to School & Playlists
Forums Director Kevin Schaefer talks about how having SMA has led to many positive interactions with strangers. On the forums this week returning to school is a topic of discussion as well as summer playlists and the latest column by Brianna Albers. Are you interested in learning more about spinal muscular atrophy? If so, please visit http://smanewstoday.com/
6m Jul 08, 2020
6m
#61 - Recapping the 2020 Cure SMA Virtual Conference
In episode 61, the SMA News Today team shares some highlights from the 2020 virtual Cure SMA conference. They discuss webinar presentations, research updates, and virtual social events which they participated in. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com
32m Jul 07, 2020
32m
Motor Function Improvement After One Year of Spinraza in Children With SMA Types 1-2
SMA News Today’s multimedia associate, Price Wooldridge, discusses a motor function improvement after one year of Spinraza in children with SMA Types 1-2. DeAnn Runge talks about the importance of embracing your differences and what made that easier for her. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
10m Jul 06, 2020
10m
Systemic Treatment May Be More Effective For Spinal Muscular Atrophy
SMA News Today’s multimedia associate, Price Wooldridge, discusses a systemic treatment that may be more effective for Spinal Muscular Atrophy. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
7m Jul 03, 2020
7m
Switching Treatments, Summer Reading & Dealing With Health Issues On Top Of SMA
Forums Director Kevin Schaefer reflects on the life of his service dog Pandy, who recently passed away. Recent topics of discussion on the forums include switching treatments, summer reading and dealing with health issues on top of SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit http://www.smanewstoday.com/
6m Jul 01, 2020
6m
Risdiplam Continues To Show Promise For Treating SMA & Pulling Off a Surprise
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Risdiplam continues to show promise for treating SMA. Forums moderator DeAnn Runge shares her attempt to pull off a surprise. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
9m Jun 29, 2020
9m
31 Days of SMA & How 96% of Children Given Spinraza As Newborns Are Able To Walk According To Trial
Forums Director Kevin Schaefer talks about the upcoming initiative 31 Days of SMA, which is a collection of stories from people in the SMA community. SMA News Today’s multimedia associate, Price Wooldridge, discusses how 96% of children given Spinraza as newborns are able to walk according to the NUTURE trial. Are you interested in learning more about spinal muscular atrophy? If so, please vi...
7m Jun 26, 2020
7m
SMA My Way: A New Platform and Patient-Focused Community & What to Binge-Watch on Netflix
Forums Director Kevin Schaefer reads from Brianna Albers’ latest column, which highlights the new patient initiative SMA My Way. Forums moderator DeAnn Runge discusses her colleague’s connection to the new platform SMA My Way. She goes on to talk about what’s being binge watched on Netflix and also what you can find on the smanewstoday.com website. Are you interested in learning more about sp...
7m Jun 24, 2020
7m
Interviews Probe How Unaffected Siblings Learn Genetic Implications of SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses interviews that probe how unaffected siblings learn the genetic implications of Spinal Muscular Atrophy. Forums moderator DeAnn Runge talks about how despite having her opinion be dismissed due to her disability her viewpoint still counts. Are you interested in learning more about spinal muscular atrophy? If so, please visit h...
8m Jun 22, 2020
8m
Too Little is Known About The Care Needs of Adults With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses how too little is known about the care needs of adults with Spinal Muscular Atrophy. Forums Director Kevin Schaefer talks about the 2019 memoir “The Pretty One,” written by disability advocate Keah Brown. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
11m Jun 19, 2020
11m
The First Virtual Cure SMA Conference, Creating a Sanctuary, Scoliosis & Epic Wheelchair Stories
Forums Director Kevin Schaefer talks about taking part in the first virtual Cure SMA conference. This week’s forum topics include DeAnn’s latest vlog regarding creating a sanctuary, scoliosis as an adult as well as epic wheelchair stories. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
7m Jun 17, 2020
7m
#60 - Interview With George Corbin
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. He currently works as a mortgage loan officer. During this discussion, George talks about growing up with SMA, his mindset of perseverance, and his real estate career. To learn more about spinal muscular atrophy, visit our website at www.smane...
37m Jun 16, 2020
37m
How Heart Problems in SMA May Be Tied To Calcium Dysregulation
SMA News Today’s multimedia associate, Price Wooldridge, discusses how heart problems in SMA may be tied to calcium dysregulation. Forums moderator DeAnn Runge shares her thoughts on why reflecting on life a year ago should evoke happiness and joy rather than sadness. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Jun 15, 2020
8m
SHINE Study Data Finds Spinraza Shows Sustained Efficacy Over Years of Use
SMA News Today’s multimedia associate, Price Wooldridge, discusses the SHINE study data showing Spinraza has sustained efficacy. In Brianna Albers’ latest column, she calls for more black representation in the disability community. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
12m Jun 12, 2020
12m
Cure SMA Conference Going Virtual in 2020 & Tips On Purchasing A New Electric Wheelchair
Forums Director Kevin Schaefer talks about celebrating six years with his caregiver Randy. With the Cure SMA Conference going virtual this year it’s led to many topics of conversation on the forums. In other discussions efforts to be inclusive regarding diversity in the SMA community have been brought up. Michael Morale’s latest video regarding tips on wheelchair selection has been released as ...
7m Jun 10, 2020
7m
Feeding Issues Are Still Common Among SMA Type 1 Infants, Despite New Therapy Options
SMA News Today’s multimedia associate, Price Wooldridge, discusses how feeding issues still are common among SMA Type 1 infants, despite new therapy options. As salons open up forums moderator talks about how she decided to risk it for a haircut. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6m Jun 08, 2020
6m
Real-World Study Shows That Spinraza Meets Most Therapeutic Expectations of Adult SMA Patients
SMA News Today’s, Senior Director of Multichannel Content, Michael Morale, discusses a real-world study that shows that Spinraza meets most therapeutic expectations of adult SMA patients. Forums Director Kevin Schaefer shares the story of the first trip he took with his caregiver Randy a few years ago. Are you interested in learning more about spinal muscular atrophy? If so, please visit https:...
13m Jun 05, 2020
13m
#58 - A Conversation with Brianna Albers
In episode 59, host Kevin Schaefer talks with our very own columnist Brianna Albers. Brianna talks about quarantine, values-based living, and how she's keeping herself occupied during the COVID-19 pandemic. It's easy to wonder how long the pandemic will last and to dream about life returning to normal, but Brianna encourages listeners to facilitate contentment in the present. To keep herself en...
38m Jun 04, 2020
38m
Tips For Staying Active and Mentally Engaged This Summer & How The JACO Robotic Arm Opens Doors
Forums Director Kevin Schaefer shares some tips for staying active and mentally engaged this summer, while still remaining in self-isolation. A hot topic on the forums is how the JACO Robotic Arm opens doors both literally and figuratively. Also being discussed are comfort levels with resuming activities as the world opens up as well as altering summer plans, like taking SMA conference virtual....
5m Jun 03, 2020
5m
Study Finds Respiratory Weakness in SMA is Most Pronounced in Childhood & Treatment Options for SMA
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 childhood. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
9m Jun 01, 2020
9m
SMA Treatment and Screening Programs “Eessential” in The Covid-19 Pandemic
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 pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please v...
10m May 29, 2020
10m
Risdiplam, Switching Treatments & Difficult Breathing While Wearing Masks
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 being discussed are questions posed during a courageous co...
6m May 27, 2020
6m
Study Addresses Dilemmas Regarding Newborn Screening and SMA Treatment
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 treatment. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanew...
9m May 25, 2020
9m
How a Family and Doctor “Partnership” That Led to a Baby’s Spinraza Treatment
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 treatment. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m May 22, 2020
8m