#50 - Roundtable Discussion - January 2020

#50 - Roundtable Discussion - January 2020

In episode 50, hosts Kevin Schaefer and Michael Morale discuss updates on Roche and Genentech’s experimental therapy risdiplam. Now that this drug is under FDA-approval, we answer questions regarding its potential cost, and what kind of impact it will have on the SMA community. They also talk about two of their recent columns from the main site. The first is about media representation of people with disabilities; and the second, written by parent columnist Michael Casten, is about working through life’s frustrations. Listen here, and share your thoughts in our forums. Links: -News Story: https://smanewstoday.com/2020/01/15/roche-starts-global-early-access-program-for-sma-therapy-risdiplam-in-europe/ -Kevin’s Column: https://smanewstoday.com/2020/01/14/media-disability-representation-storytelling-comics/ -Michael Casten’s Column: https://smanewstoday.com/2020/01/15/frustrations-life-dog/

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Avsnitt(446)

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

#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 Aug 30min

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

#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 Maj 33min

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

#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 Apr 30min

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

#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 Feb 53min

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

#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 Dec 202540min

#154: Coach Damon Vincent, adaptive fitness specialist

#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 Nov 202535min

#153: Annie Heathcote, Entrepreneur and Speaker with SMA

#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 Sep 202530min

#152: Kamil Goungor, Disability activist

#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 Aug 202545min

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