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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

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… Read more

To increase her independence, forums moderator DeAnn Runge is debating if she should pursue a service dog, a JACO Robotic Arm or both. Each option presents with pros and cons.

SMA News Today’s multimedia associate, Price Wooldridge, discusses how adult patients with Spinal Muscular Atrophy benefit from Spinraza… Read more

Forums Director Kevin Schaefer talks about ideas for staying fit and healthy during COVID-19 isolation.

SMA News Today’s multimedia associate, Price Wooldridge, discusses the approval of Zolgensma for treatment of Spinal Muscular Atrophy in… Read more

The Easter holiday looked a lot different this year than it traditionally does. Forum members shared their plans for the holiday to make it special. Accessible toys was another topic of conversation. Also don’t forget to check out DeAnn’s latest vlog on having fun with subscription boxes.

Forums Director Kevin Schaefer talks about how… Read more

Forums moderator DeAnn Runge is looking for solutions to help with odd jobs and spring cleaning. SMA News Today’s multimedia associate, Price Wooldridge, discusses a French study which finds palliative care for SMA Type 1 babies has… Read more

Forums Director Kevin Schaefer talks about the Stephen Hawking biopic “The Theory of Everything,” and how this film explores disability.

SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA shifting it’s Risdiplam decision to August to include data on older… Read more

COVID-19 is still a popular topic of discussion on the forums. Topics associated include continuing with Spinraza treatments, scheduling caregivers, how to handle outside deliveries and more.

Also, forums Director Kevin Schaefer reviews the new Netflix documentary “Crip Camp,” which tells the story of the early disability rights… Read more

Amid the coronavirus crisis forums moderator DeAnn Runge has to decide if she wants to risk exposure to the virus to continue her Spinraza treatments.

SMA News Today’s multimedia associate, Price Wooldridge, discusses how scoliosis surgery in SMA children is linked to permanent motor skill… Read more

Forums Director Kevin Schaefer talks about the new Netflix documentary “Crip Camp,” which tells the story of a summer camp in the 50s and 60s for teens with disabilities.

SMA News Today’s multimedia associate, Price Wooldridge, discusses markers of inflammation essential for AAV gene therapy… Read more

Forums moderator DeAnn Runge talks about how having a service dog has enhanced her life. SMA News Today’s multimedia associate, Price Wooldridge, discusses a global rare disease group’s goal to have 1,000 new therapies by 2027, despite the current COVID-19… Read more

Forums Director Kevin Schaefer shares some book, movie, and Spotify recommendations for people who are on quarantine.

SMA News Today’s multimedia associate, Price Wooldridge, discusses a study which… Read more

Forums Director Kevin Schaefer talks about alternative solutions to physical therapy. As a result of the COVID-19 pandemic, he has to refrain from going to his appointments for now.

Also, believe it or not, despite being high… Read more

Forums moderator DeAnn Runge shares her message to friends and family in regards to COVID-19 and their lives being turned upside down.

SMA News Today’s multimedia associate, Price Wooldridge, discusses a new… Read more

Forums Director Kevin Schaefer shares some of his tips for self-isolation during the Coronavirus (COVID-19) outbreak.

SMA News Today’s multimedia associate, Price Wooldridge, discusses how the synaptotagmin 13 (SYT13) gene can prolong life in mice with ALS and… Read more

One of the main topics of conversation over on the forums is COVID-19. Posted are links to resources and tips on staying productive during lockdown. DeAnn also discusses where to find the latest SMA News Today columns.

Also, forums Director Kevin Schaefer shares his thoughts on staying cautious during the Coronavirus pandemic, and… Read more

Anticipation is growing as Roche/Genentech’s treatment risdiplam, the first oral medication to treat SMA, is under FDA review.

Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how the lack of SMA protein may also directly contribute to… Read more

Hey everyone! Hope you’re having a great week. Check out Ryan’s latest video here.

In this episode of “Ryan’s Robotics,” Ryan demonstrates the three most important functions of his JACO Robotic arm. He demonstrates how this device helps him increase his independence.

Do you have any questions about the JACO arm?

SMA News Today forums moderators and contributors have been joining forces to create exclusive audio content for the SMA community. Here are the podcast episodes from January 27 to January 31.

January 27

We discuss a study that suggests that regular CSF… Read more

In this episode of “Ryan’s Robotics”, Ryan demonstrates how he cleans his Jaco robotic arm, and how it’s important to make sure that you perform this maintenance on a routine basis.

 

Are you interested in learning more about the spinal muscular atrophy?

Please visit http://www.smanewstoday.com 

 

SMA News Today forums moderators and contributors have been joining forces to create exclusive audio content for the SMA community. Here are the podcast episodes from November 11 to November 15.

November… Read more

SMA News Today forums moderators and contributors have been joining forces to create exclusive audio content for the SMA community. Here are the podcasts episodes from February 4 through February 8.

 

February 4

We discuss a newly launched website regarding patient education programs on gene and cell therapies. Also, SMA… Read more

SMA News Today forums moderators and contributors have been joining forces to create exclusive audio content for the SMA community. Here are the podcasts episodes from January 21 through January 23.

 

January 28

https://open.spotify.com/episode/2IvlkSJseET5b85l0vfxMV

We discuss how scientists have developed a new method to… Read more

SMA News Today forums moderators and contributors have been joining forces to create exclusive audio content for the SMA community. Here are the podcasts episodes from January 21 through January 23.

January 21

We discuss how high-resolution magnetic resonance imaging, (MRI), of the spinal cord may be a non-invasive way of… Read more

SMA News Today forums moderators and contributors have been joining forces to create exclusive audio content for the SMA community. If you’re interested, you can find all the podcast episodes, roundtables and interviews here: https://audioboom.com/channels/4973736

You can also find and follow us on Apple Podcasts, Soundcloud, Deezer, … Read more

Click here to read Kevin Schaefer moving tribute to Carson Berry, a friend who passed away due to complications from SMA just before his 22nd birthday.

Have you ever lost someone so close to you? If you feel comfortable, would you share your story with us?

“First impressions are crucial for everyone in that they can determine how someone views you for a lasting time,” writes Ange L. “Unfortunately, first impressions often involve an individual’s appearance, and after living 18 years with SMA, I have learned that it is better to address my disease right off the bat when meeting someone new.”

… Read more

In this column, Alyssa Silva continues to describe how and why her doctor’s decision to prescribe the SMA therapy Spinraza (nusinersen) changed her life forever, for the better. Read more from Alyssa here.

Are you on Spinraza? What has your experience been like? Did you feel the same excitement as Alyssa when it was offered to you? If… Read more

The Cure SMA campaign is designed to help parents and healthcare professionals recognize motor delays in spinal muscular atrophy early in a child’s life. Click here to find out more about it.

What do you think about the Cure Campaign? Do you or will you participate?

Columnist Kevin Schaefer understands the frustrations of many criticizing the lengthy wait for new SMA medications, but he remains hopeful and patient. Click here to read more from Kevin.

Can you relate to Kevin? What gives you hope for the future?

The two researchers behind the development of Spinraza (nusinersen) have been awarded a prestigious 2019 Breakthrough Prize in Life Sciences. Read the full story here.

Do you take Spinraza? How has it changed your life?

Columnist Kevin Schaefer shares which technologies have helped him to tackle various challenges in his everyday life with SMA. Click here to read more from Kevin.

Are you a tech junkie like Kevin? If so, what do you love most about technology? How does technology assist you in your daily life?