SMA News & Perspectives

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. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 surgery. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 discussion. To learn more about spinal muscular atrophy, visit www.smanewstoday.com.

In episode 57, host Kevin Schaefer interviews Heather Kerstetter from Philadelphia, Pennsylvania. Heather is a social worker who has SMA Type 3. She talks about growing up with SMA, relationships, and her advocacy work for people with disabilities. To learn more about spinal muscular atrophy, visit www.smanewstoday.com.

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 disorders. Are you interested in learning more about spinal muscula...

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 pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visit https:...

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 preparedness folders. Are you interested in learning more about spinal mu...

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 trial. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 Spinraza. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 assistance devices have also been topics of conversation. Are you...

In episode 56, hosts Kevin Schaefer and Michael Morale provide an overview of the different SMA treatments, and discuss recent news about the experimental therapy risdiplam. Then in part two, special guest Ralph Yaniz joins Kevin and Michael to discuss the new Netflix documentary “Crip Camp.” Ralph is a columnist for Muscular Dystrophy News Today, and a disability rights activist. Listen to their...

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 treatments. Are you interested in learning more about spinal muscular atrophy? If so, p...

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 Japan. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 his lifelong obsession with action figures contributes to his i...

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 improved. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.co...

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 movement. Are you interested in learning more about spinal muscular a...

In episode 55, host Kevin Schaefer interviews Victor Guerra from Fresno, California. Victor is an entrepreneur who has SMA Type 2, and he uses his online store to promote messages of positivity and motivation. During this discussion, he talks about growing up with SMA, building his business, and dealing with medical setbacks throughout his life. Victor’s website: www.victortheinspiration.com Victo...

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 loss. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewst...

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 use. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanews...

With a community full of problem solvers the forums have become a place to share ideas that will brighten spirits during these difficult times. Also, forums Director Kevin Schaefer reflects on past times of self-isolation, and how the one he’s experiencing now compares. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 recommends a lower radiation dose for Spinraza scans. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 on the list, the coronavirus isn’t the only topic of conversation on the forums. DeAnn is in need of a recommendation for a cell phone and Alyssa is wondering what made you s...

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 test which screens 420 genes for markers of Spinal Muscular Atrophy and other diseases. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewsto...