#120: Dom Evans, Activist and Filmmaker

SMA News Today’s multimedia associate, Price Wooldridge, discusses neurofilaments, before beginning Spinraza, may predict motor improvements in children with Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reviews the Oscar nominated film "The Sound of Metal". The plot of which features the drummer of a heavy metal band who suddenly loses his hearing. DeAnn draws several parallels to this film in regards to her own disability. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

30 Huhti 20219min

SMA News Today’s multimedia associate, Price Wooldridge, discusses Health Canada’s approval of Evrysdi for at-home treatment in SMA patients. Also, Forums Director Kevin Schaefer reads a column by Ari Anderson about his friendship with a North Carolina senator. Link to Ari’s column: https://smanewstoday.com/columns/2021/04/22/importance-people-recognize-my-worth-senator-thom-tillis/ Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

28 Huhti 20218min

SMA News Today’s multimedia associate, Price Wooldridge, discusses the immune reponse to Zolgensma can be common in older Spinal Muscular Atrophy (SMA) children. Also, SMA News Today content creator DeAnn Runge focuses on a couple columns that struck a chord with her. Brianna’s latest column, "The Green-eyed Elephant in the Room", talks about something she’s had to contend with her whole life: jealously. Perceptions are a subject Alyssa tackles in her column, "Why My Teacher and I Faked My Detention in Middle School" - both give great insight regarding these issues. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

26 Huhti 20219min

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/

23 Huhti 20219min

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/

21 Huhti 202110min

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/ ================================ Links to columns: -”Why I Never Had a Spinal Fusion: A Retrospective, 10 Years Later” by Sherry Toh: https://smanewstoday.com/columns/2021/04/14/spinal-fusion-retrospective-10-years-later/ -”An SMA Patient and a Pulmonologist Comment on the COVID-19 Vaccine” by Halsey Blocher: https://smanewstoday.com/columns/2021/03/26/covid-19-vaccine-comments-sma-patient-pulmonologist/ -”How to Build and Maintain a Network of ‘Masked Advocates’” by Ari Anderson: https://smanewstoday.com/columns/2021/03/25/building-maintain-network-masked-advocates/ ================================ 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.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

20 Huhti 202137min

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/

19 Huhti 20217min

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/

16 Huhti 20219min