SMA News & Perspectives16 Maalis 2021

#78: Discussing Switching Treatments, News Stories, and Recent Columns

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-patient-hero-raises-awareness-fashion-modeling/ ================================ Links to columns: -”Mama, It’s Amazing What SMA Patients Can Do: A Reminder of Our Adaptability” by Sherry Toh - https://smanewstoday.com/columns/2021/03/03/sma-patients-adaptability-amazing/ -”Hot Air Balloons Adrift: Appreciating My Pulmonary Function With SMA” by Katie Napiwocki - https://smanewstoday.com/columns/2021/03/04/appreciating-pulmonary-function-hot-air-balloons-adrift/ -”Amid the Busyness of Life With SMA, I’m Learning to Embrace Stillness” by Kevin Schaefer - https://smanewstoday.com/columns/2021/03/09/embracing-stillness-amid-busy-life-sma/ ================================ 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 www.smanewstoday.com

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#159: Emily Figueroa - Social Media Manager and Adult with SMA

In episode 159, host Kevin Schaefer talks with Emily Figueroa from Phoenix, Arizona. Emily is a social media manager and adult with SMA, as well as a teacher and Spanish-English interpreter at her chu...

12 Elo 30min

#158: Alberto Lopez -A single father talks about raising his daughter with SMA

In episode 158, host Kevin Schaefer talks with Alberto Lopez from Los Angeles County, California. Alberto is a consultant and a father of three daughters, one of whom has SMA. He discusses adapting to...

20 Touko 33min

#157: Delphine Andrews - Life coach and disability advocate with SMA

In episode 157, host Kevin Schaefer talks with Delphine Andrews from Durham, North Carolina. Delphine is a life coach and disability advocate living with SMA. She talks with Kevin about her journey to...

13 Huhti 30min

#156: Maylan Chavez and Sory Rivera: Friends and podcast hosts with SMA

In episode 156, host Kevin Schaefer talks with Maylan Chavez and Sory Rivera, two friends with SMA who host the “Access Granted” podcast together. Maylan is from Hialeah, Florida, and Sory is from Tyl...

16 Helmi 53min

#155: Jasmine Jackson, digital creator and mother with SMA

In episode 155, host Kevin Schaefer talks with Jasmine Jackson from Vancouver, Washington. Jasmine is a development and marketing manager, digital creator, and also a mother living with SMA type II. S...

19 Joulu 202540min

#154: Coach Damon Vincent, adaptive fitness specialist

In episode 154, host Kevin Schaefer talks with Coach Damon Vincent from Lafayette, Louisiana. Damon is an adaptive fitness specialist who works with clients with various rare diseases and disabilities...

17 Marras 202535min

#153: Annie Heathcote, Entrepreneur and Speaker with SMA

In episode 153, host Kevin Schaefer talks with Annie Heathcote from Mazomanie, Wisconsin. Annie is a multi-business owner, social media influencer, author, and lifelong disability advocate whose life ...

25 Syys 202530min

#152: Kamil Goungor, Disability activist

In episode 152, host Kevin Schaefer talks with Kamil Goungor from Athens, Greece. Kamil, who has SMA type II, works for the European Network on Independent Living and is the co-founder and chair of th...

28 Elo 202545min