Sma News & Perspectives

SMA News Today’s multimedia associate, Price Wooldridge, discusses prenatal enrollment of newborns for Spinal Muscular Atrophy (SMA) leads to faster results and speedier treatments. Also, DeAnn Runge shares how she turned around a frustrating situation into success all while keeping her cat entertained. 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 Apitegromab improving or stabilizing motor function in children and young adults with Spinal Muscular Atrophy (SMA). Forums Director Kevin Schaefer reads a column about his wheelchair malfunctioning and how he handled the situation. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 80, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss updates on Scholar Rock’s treatment, Apitegromab, as well as other news stories and forum topics. Finally, they highlight some recent columns from our main website. ================================ Links to news stories and forum topics: -Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds: https://smanewstoday.com/news-posts/2021/03/30/rare-diseases-cost-us-nearly-1-trillion-economic-burden-2019-everylife-foundation-study/ - Apitegromab Over 1 Year Bolsters Motor Abilities of Types 2 and 3: TOPAZ Trial: https://smanewstoday.com/news-posts/2021/04/09/top-line-topaz-trial-data-support-apitegromab-muscle-targeted-scholar-rock-therapy/ - Sleep solutions: https://smanewstoday.com/forums/forums/topic/sleep-solutions-2/ - Trying to keep expectations in check: https://smanewstoday.com/forums/forums/topic/trying-to-keep-expectations-in-check/ ==========

SMA News Today’s multimedia associate, Price Wooldridge, discusses the European Alliance for Newborn Screening calling on all European states to introduce routine screening for all newborns for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge talks about the latest topics being discussed on the forums. As allergy season is ramping up ways to combat the symptoms are an all-important area of conversation. Sleep solutions from Melatonin to pillow combinations and even a lift bed have been highlighted as well. Starting Evrysdi is causing columnist Brianna Albers to reflect on the generations of SMAers that came before her. 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 the architecture of the SMN complex, which is altered in people with Spinal Muscular Atrophy (SMA). Also, throughout her lifetime DeAnn Runge has had the unique opportunity to use rear, mid and front wheel drive wheelchairs. In her latest Dose of DeAnn vlog she shows a glimpse of all three and talks about making her decision. 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 spinal fluid changes with Spinraza’s use in patients with Spinal Muscular Atrophy (SMA). Also, Kevin Schaefer reads a column by Ari Anderson about building and maintaining a team of “masked” advocates. 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 Evrysdi’s approval in Europe as the first oral, at-home treatment for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reads the latest column from Brianna Albers as she continues the quest to start the SMA treatment Evrysdi, The Evrysdi Chronicles: Full Speed Ahead. 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 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 learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 range of voices. It is our responsibility to highlight the diversity within the SMA community. You can find the transcript of this conversation here: http://bit.ly/SMA-Podcast79-Transcript ================================ Link to Ainaa’s Instagram: https://www.instagram.com/ainaafrhanah/tagged/ ================================ Music Credits: Alec's Band A Young Griffin Boyle In Drag ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstod

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 guests include Angela and Justin Titcombe and Hugo Travino. The forums serve as another great way to connect with the community as do the columns. 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 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 to jump through to remain living her life. 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 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 routines are a topic of conversation as well as a wheelchair feature wish list. 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 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 muscular atrophy? If so, please visit https://smanewstoday.com/

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 our website at www.smanewstoday.com.

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. 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 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-wheel drive to front wheel drive. 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 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 interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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://smanewstoday.com/news-posts/2021/02/24/cure-sma-free-virtual-therapy-sessions/ -Zolgensma Available Soon to Eligible SMA Type 1 Patients in England, Scotland https://smanewstoday.com/news-posts/2021/03/10/zolgensma-available-certain-sma-type-1-patients-england-scotland/ -New SMN-boosting Molecule Shows Promise as Add-on Therapy https://smanewstoday.com/news-posts/2021/02/17/new-smn-protein-boosting-molecule-shows-promise-add-on-sma-therapy-study-patient-derived-cells/ -Rare Disease “Patient Hero” Raises Awareness Through Fashion https://smanewstoday.com/news-posts/2021/02/25/tristan-lee-rare-disease-day-pati