SMA News & Perspectives

SMA News Today’s multimedia associate, Price Wooldridge, discusses the benefits of Spinal Muscular Atrophy (SMA) newborn screening outweighing the disadvantages. After watching a YouTube video where a wife and another friend help a gentleman with quadriplegia into a hot tub, DeAnn Runge talks about the struggles of certain activities and questions if they’re worth the effort. Are you interested in...

In episode 79, host Kevin Schaefer talks with Ainaa Farhanah from Kuala Lumpur, Malaysia. Ainaa is a graphic designer and art teacher with SMA. She talks about growing up with SMA, family, college, and advocating for others with disabilities. Note: Ainaa does have limited speech capabilities, but we chose to leave the recording as it is. We at SMA News Today want to provide our listeners with a ra...

SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock winning a U.S. patent to Apitegromab for treating Spinal Muscular Atrophy (SMA). Also, Kevin Schaefer talks about returning to movie theaters after receiving the COVID-19 vaccine. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma helped pre-symptomatic babies with Spinal Muscular Atrophy (SMA) achieve age-appropriate motor milestones. Instagram is a fantastic way to connect with the SMA community. Kevin Schaefer has been host for live conversations with Dr. Danielle Sheypuk and Alyssa Silva who talked about a wide range of topics. Upcoming gue...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgenzma continues to prevent motor function decline for five years for patients with Spinal Muscular Atrophy (SMA). Also, SMA News Today content creator DeAnn Runge talks about how justifying our needs has become second nature. She discusses how she’s appealing a denial for the Jaco Robotic Arm as well as other hoops she has...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi leads to longer-term benefits for Spinal Muscular Atrophy (SMA) patients, Types 2 and 3. Forums Director Kevin Schaefer talks about disability representation in the movie “Zack Snyder’s Justice League.” Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgenzma being found safe and effective in Spinal Muscular Atrophy (SMA) toddlers. Also, DeAnn Runge welcomes new listeners and forum members as she points out the forums are a supportive and informative community. Vaccine discussions continue as vaccination site crowd size becomes concerning. The importance of schedules and routi...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how treatment with Evrysdi is safe in Spinal Muscular Atrophy (SMA) patients previously given other therapies. DeAnn Runge talks about how much technology has evolved in her lifetime. From cassette tapes to digital music she discusses how the advancements have enhanced her life. Are you interested in learning more about spinal musc...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the SMA Foundation and PTC Therapeutics joint efforts to fund regenerative medicine research. Also, Forums Director Kevin Schaefer shares his perspective on getting the COVID-19 vaccine. Also, he discusses an Instagram live series he’s hosting on the topic of relationships and SMA. To learn more about spinal muscular atrophy, visit...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how the therapy, Reldesemtiv, aids motor and respiratory strength in Spinal Muscular Atrophy (SMA) Types 2 and 3. Also, with vaccinations ramping up across the country daydreaming is a popular trend on the forums. Post vaccination activities top the list. Recent articles by SMA News Today columnists are always of interest as well....

SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgenzma being added to the list of eligible medications for Spinal Muscular Atrophy (SMA) Type 1 patients in England and Scotland. Also, despite a global pandemic complicating the process DeAnn Runge received her new wheelchair in record time. She did have to make compromises though and talks about getting used to going from rear...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how adults with Spinal Muscular Atrophy (SMA) usually don’t experience weakness or impairment of eye muscles. Forums Director Kevin Schaefer reads a column by Ari Anderson about pursuing a team of advocates. Link to Ari’s column: https://smanewstoday.com/columns/2021/03/11/knocking-on-doors-searching-for-advocates/ Are you interest...

In episode 78, host Kevin Schaefer talks with fellow SMA News Today contributor and Senior Director Michael Morale. They discuss Michael’s decision to switch back to Spinraza, treatment updates, and other news stories. Finally, they highlight some recent columns from our main website. ================================ Links to news stories: -Cure SMA offering free virtual therapy sessions https://s...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the challenges of life as a teen and young adult with Spinal Muscular Atrophy (SMA). Also, SMA News Today content creator DeAnn Runge shares the latest column by Brianna Albers. It goes into detail on why she’s being denied treatment and her feelings regarding the process. Are you interested in learning more about spinal muscular a...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the Committee for Medicinal Products for Human Use (CHMP) approval of Evrysdi as the first oral, at-home Spinal Muscular Atrophy (SMA) treatment. DeAnn Runge talks about her hesitancy to meet with a dietician to discuss GI issues she’s been dealing with. Are you interested in learning more about spinal muscular atrophy? If so, plea...

SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi improving survival and motor development in infants with Spinal Muscular Atrophy Type 1. Forums Director Kevin Schaefer talks about managing his mental health and embracing the stillness. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge, discusses a mother who has adopted and is raising four girls from China with Spinal Muscular Atrophy (SMA). Also, a variety of topics are being talked about on the SMA News Today forums because of the diverse community that not only includes those who have SMA but parents and caregivers as well. Recent conversations include van conversions,...

SMA News Today’s multimedia associate, Price Wooldridge, discusses why brain involvement in Spinal Muscular Atrophy Type 1 is still poorly understood. Also, DeAnn Runge talks about how she’s struggling to personalize her new chair. Right now she feels like it’s just another piece of equipment, but would like ideas on how to make it more unique to her. Are you interested in learning more about spin...

SMA News Today’s multimedia associate, Price Wooldridge, discusses the varying perspectives from parents on Spinraza therapy for their children. Forums Director Kevin Schaefer reads a column by Ari Anderson about what it means to be rare. Link to Ari’s column: https://smanewstoday.com/columns/2021/02/25/rare-diseases-flying-under-radar/ Are you interested in learning more about spinal muscular atr...

In episode 77, host Kevin Schaefer talks with Jeremy Camp from San Diego, California. Jeremy and his wife Amanda have three children, and their youngest son Asher has SMA Type 1. He talks about his family’s SMA journey, his personal life, and his mantra of surrendering to the situation. ================================ Link to Asher’s Facebook page: https://www.facebook.com/asherlennonlionsmajourn...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a new SMN-boosting molecule which shows promise as an add-on therapy for Spinal Muscular Atrophy (SMA). Also, Rare Disease Day is a day to recognize lives touched by rare diseases such as SMA. Discussions in the forums have revolved around this subject as have columns and even the latest Dose of DeAnn vlog where she interviews Dan...

SMA News Today’s multimedia associate, Price Wooldridge, discusses a rare case of Spinal Muscular Atrophy linked with a progressive myoclonic epilepsy. Balancing mind and body can be tricky. DeAnn Runge shares her struggles with accepting her limitations as it pertains to purchasing products she can use. Are you interested in learning more about spinal muscular atrophy? If so, please visit https:/...

SMA News Today’s multimedia associate, Price Wooldridge, discusses assistive devices which should be standard in managing Spinal Muscular Atrophy (SMA) Type 1. Forums Director Kevin Schaefer talks about the close friends in his life, and how these relationships connect to his place in the rare disease community. To learn more about spinal muscular atrophy, visit our website at http://www.smanewsto...

SMA News Today’s multimedia associate, Price Wooldridge, discusses quantitative MRI imaging showing itself to be a sensitive measure of decline in young adults with Spinal Muscular Atrophy (SMA). Now that various treatments are available for SMA, it can be easy to forget that many individuals are starting treatment for the very first time. Alyssa Silva’s latest column details her feelings as other...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improves motor function in the case of a teenager with late-onset Spinal Muscular Atrophy (SMA). SMA News Today content creator DeAnn Runge shares a discussion she had regarding accessibility. Despite having come a long way where accessibility is concerned not everyone feels it’s worthwhile. Are you interested in learn...