#122: A Conversation With Rare Disease Advocates

#122: A Conversation With Rare Disease Advocates

In episode 122, host Kevin Schaefer talks with three of his coworkers from BioNews Inc., the parent company of SMA News Today. Brittany Foster is BioNews’ HR Coordinator, and she lives with pulmonary hypertension. Brad Dell is the Director of Community Content, and he lives with cystic fibrosis. Matt Lafleur is the Culture Coordinator, and he lives with Friedreich’s ataxia. In anticipation of Rare Disease Day 2023, these advocates share their experiences, pitfalls, and triumphs living with their respective conditions. ================================ Brittany’s column: https://pulmonaryhypertensionnews.com/recharged-and-rewired-brittany-foster/ Brad’s column: https://cysticfibrosisnewstoday.com/victorious-brad-dell/ Matt’s column: https://friedreichsataxianews.com/little-victories-matthew-lafleur/ ================================ 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

Episoder(443)

#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 Des 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

#151: Anton Paras, marketing executive in digital health

#151: Anton Paras, marketing executive in digital health

In episode 151, host Kevin Schaefer talks with his colleague, Anton Paras. Anton is a marketing executive for Bionews Inc., the publisher of SMA News Today, and he lives in the Bay Area, California. R...

30 Jul 202536min

#150: Jenna and Tanya Vega share their love story

#150: Jenna and Tanya Vega share their love story

In episode 150, host Kevin Schaefer talks with Jenna and Tanya Vega from Palm Springs, California. Jenna and Tanya discuss their seven years together, navigating daily life with SMA, and their wedding...

1 Jul 202528min

#149: Jessica Keogh, Ed. D., Educator and Life Coach With SMA

#149: Jessica Keogh, Ed. D., Educator and Life Coach With SMA

In episode 149, host Kevin Schaefer talks with Dr. Jessica Keogh from Philadelphia, Pennsylvania. An educator, disability advocate, and certified life coach, she discusses growing up with SMA, living ...

21 Mai 202541min

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