#80: Updates on Apitegromab and Discussing SMA Columns

#80: Updates on Apitegromab and Discussing SMA Columns

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

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#141: Quinn Bucher, Theater Student With SMA

#141: Quinn Bucher, Theater Student With SMA

In episode 141, host Kevin Schaefer talks with Quinn Bucher (he/they) from Athens, Ohio. A student at Earlham College studying theater, he talks about growing up in an arts-oriented household, making ...

25 Juni 202450min

#140: Lucy Trevino, Academic and Advocate

#140: Lucy Trevino, Academic and Advocate

Note: This podcast includes thoughts about suicide. If you are struggling with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (988, or 988lifeline.org, available 24/7)...

6 Juni 202439min

#139: Dianna Warren, Ms. Wheelchair USA Ambassador

#139: Dianna Warren, Ms. Wheelchair USA Ambassador

In episode 139, host Kevin Schaefer talks with Dianna Warren from Canton, Ohio. Dianna is an ambassador for Ms. Wheelchair USA, and for 32 years she ran a disability bowling league. She discusses thes...

7 Maj 202438min

#138: Nolan and Blake Shofner, Brother Entrepreneurs

#138: Nolan and Blake Shofner, Brother Entrepreneurs

In episode 138, host Kevin Schaefer talks with Nolan, who lives with SMA, and Blake Shofner from Princeton, Illinois. The brothers discuss their dynamic as siblings and business partners, as they ar...

9 Apr 202438min

#137: Jared Wayland: Graphic Designer and Music Connoisseur

#137: Jared Wayland: Graphic Designer and Music Connoisseur

In episode 137, host Kevin Schaefer talks with Jared Wayland from Ontario. Jared discusses growing up with SMA type 3 and becoming a husband and father. He also talks about his passion for music and g...

5 Mars 202447min

#136: Shaniqua Granby Discusses Identity and Community

#136: Shaniqua Granby Discusses Identity and Community

In episode 136, host Kevin Schaefer talks with returning guest Shaniqua Granby as she shares life updates and discusses how she navigates struggles and embraces community. ===========================...

6 Feb 202437min

#135: Ryan Kinnear, Fisherman and Hunter With SMA

#135: Ryan Kinnear, Fisherman and Hunter With SMA

In episode 135, host Kevin Schaefer talks with Ryan Kinnear from Glendale, Arizona. An avid fisherman and outdoor enthusiast, he uses assistive technology to pursue his passions. Ryan talks about usin...

9 Jan 202435min

#134: Dr. Edward Smith, Neurologist and SMA Specialist

#134: Dr. Edward Smith, Neurologist and SMA Specialist

In episode 134, host Kevin Schaefer talks with Dr. Edward Smith from Hillsborough, North Carolina. Dr. Smith spent the majority of his career as a clinical neurologist, and Kevin was one of his longti...

5 Dec 202359min

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