#129: Rylie Erbacher, Rare Artist With SMA
In episode 129, host Kevin Schaefer talks with Rylie Erbacher and her mom, Stephanie, from Iowa. Rylie has SMA, and she was recently recognized as one of 10 artists from around the country honored in Washington, D.C., for her accomplishments as a Rare Artist, an artist living with a rare disease. She and Stephanie discuss this journey, as well as what their daily lives look like. ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
5 Juli 202328min
#128: Jenna Coburn, Social Media Manager, LGBTQIA+ and Disability Advocate
In episode 128, host Kevin Schaefer talks with Jenna Coburn from Palm Springs, California. Jenna is a social media and marketing manager for Access Medical, and she has SMA. She talks about her family life, how she started her career as a teenager, her relationship with her girlfriend, and the intersectionality of her LGBTQIA+ and disability identities. ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.
7 Juni 202341min
#127: Kevan Chandler, author, traveler, and nonprofit founder
In episode 127, host Kevin Schaefer talks with Kevan Chandler, founder of the nonprofit organization We Carry Kevan. In 2016, Kevan used an adaptive backpack so that his friends could carry him on a trip across Europe. This adventure formed the basis of his nonprofit. Kevan is now an author, speaker, and world traveler. He has SMA type 2, and he currently lives in Indiana with his wife, Katie.
2 Maj 202351min
#126: Janelle Fiesta and Antoine Vuong, interabled couple
In episode 126, host Kevin Schaefer talks with Janelle Fiesta and Antoine Vuong from Honolulu, Hawaii. They are an interabled couple who met when they were both in high school. Janelle shares her experiences living with SMA and Antoine talks about being her partner. They also discuss going to the 2022 Cure SMA conference in Anaheim, California. ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
4 Apr 202339min
#125: Brooklyn Nichols, child author with SMA, and her mother, Keanna
In episode 125, host Kevin Schaefer talks with Brooklyn and Keanna Nichols from Athens, Alabama. Brooklyn is a middle schooler with SMA who co-authored a children’s book called “A Do Nothing Day” with her mom’s cousin. She and her mom talk about inclusivity, living with SMA, and the origins of the book. ================================ To order a copy of the book, email Keanna at robertnkeanna@icloud.com. ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
7 Mars 202353min
#124: A conversation with an interabled couple, Steve and Brittany Bingman
In episode 124, host Kevin Schaefer talks with Steve and Brittany Bingman from Mount Juliet, Tennessee. Steve is an administrative officer at the U.S. department of veteran affairs, and he lives with SMA. Brittany is Steve’s wife, and she is a licensed social worker. They discuss their marriage and family, their daily lives, and getting involved with the SMA community. ================================ Steve’s 31 Days of SMA story: https://smanewstoday.com/31-days-of-sma/31-days-sma-superior-motivational-attitude/ Brittany’s 31 Days of SMA story: https://smanewstoday.com/31-days-of-sma/31-days-sma-being-wife-mom-caregiver-spouse/ ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
21 Feb 202346min
#123: A Conversation With LaMondre Pough and Gabrielle Runyon, Two Black Disability Advocates
In episode 123, host Kevin Schaefer talks with returning guests LaMondre Pough and Gabrielle Runyon, two Black Disabled advocates. In recognition of Black History Month, LaMondre and Gabrielle share their experiences growing up with SMA, the intersectionality of their identities, and the work they’re doing now. ================================ 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
7 Feb 202352min
#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
17 Jan 202358min
