The Spinal Muscular Atrophy Podcast with Kevin Schaefer · SMA News Today

#127: Kevan Chandler, author, traveler, and nonprofit founder

·52 min·3 clips

Kevin Chandler says, "this trip may not be wheelchair friendly, but that didn't mean that it wasn't Kevin friendly."

1. The SMA News Today podcast features Kevin Schaefer speaking with Kevin Chandler about We Carry Kevin and life with SMA Type 2. 2. Kevin Schaefer is the host, a columnist and forum director for smanewstoday.com, and Kevin Chandler is an author, speaker, nonprofit founder, and traveler. 3. The episode asks how Kevin Chandler turned travel, friendship, and caregiving into the nonprofit We Carry Kevin. 4. Chandler describes a 2016 Europe trip with friends that included Paris, the English countryside, and Skellig Michael. 5. He says Skellig Michael has 600 steps of very loose rock rising about 700 to 800 feet out of the ocean. 6. Chandler explains that his friends carried him in a backpack for three weeks because the trip was not wheelchair friendly. 7. Families then asked two questions: where the backpack came from and where his friends came from. 8. He says We Carry Kevin was started to answer those questions and to offer quality time with families. 9. Chandler says he now runs the nonprofit full time, travels, speaks, writes books, and shares stories from the adventure. 10. He says the core response to the second question is not a formula but, "I'll be your friend." 11. Chandler says he grew up in a creative, vibrant home with a father who was an airplane mechanic and a mother active in the pro-life movement. 12. He says his older brother is a cartoonist and his sister has two master's degrees, including teaching English as a second language. 13. Chandler says he and his sister Connie, who also has SMA, encouraged each other by watching one another try things first. 14. He says having different weaknesses let them help each other, with one reading by the other's bed or finishing writing when the other could not. 15. Chandler says he loved comic books, the X-Men, Back to the Future, Indiana Jones, Batman, Superman, and storytelling from an early age. 16. He says he studied counseling in college for prison ministry, played in the acoustic punk band Fluffy Roadkill, and later worked in podcast post-production. 17. He says the touring band experience with friends Danny and Zach showed him that caregiving could be done by peers, not only by parents or professionals. 18. Chandler and Schaefer keep the conversation relaxed and conversational, with technical interruptions, shared jokes, and specific personal examples. 19. Listeners who like SMA advocacy, adaptive travel, and friendship-centered caregiving will get the most from this episode. 20. Listeners looking for a purely technical medical discussion may skip this one.

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