The Spinal Muscular Atrophy Podcast with Kevin Schaefer
Join host Kevin Schaefer as he explores current issues related to SMA through engaging conversations with: • People living with SMA • Medical professionals • Caregivers
Episodes
June 30, 2025 • 28 mins
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 last year. They also share tips and advice for other couples in the SMA community.
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May 20, 2025 • 41 mins
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 independently, navigating relationships, and becoming an advocate.
Jessica’s website: https://www.faithabovemyability.org/
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April 15, 2025 • 44 mins
In episode 148, host Kevin Schaefer talks with Ashley Fox and Madeline Engel from California. Ashley has SMA, and Madeline became her best friend and caregiver when they were in college. They discuss the nuances of friendship and caregiving, plus touch on confronting internalized ableism and navigating graduate school and careers.
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February 26, 2025 • 37 mins
In episode 147, host Kevin Schaefer talks with Brandi Lewis from Birmingham, Alabama. Brandi is a blood disorder awareness educator, TEDx speaker, writer, and nonprofit founder. She is passionate about helping others diagnosed with a chronic illness. She was diagnosed with aplastic anemia and PNH, the symptoms of which began in 2009. Her nonprofit, Brandi’s Blessings, was created to spread awareness and support blood disorder ...
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January 13, 2025 • 31 mins
In episode 146, host Kevin Schaefer talks with TJ Wall from Texarkana, Texas. TJ is working on his master’s in education at Texas A&M University, and he hopes to become a high school football coach. He talks about growing up with SMA, his love of sports, and his future aspirations.
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To take part in our ongoing discussions regarding SMA, please visit www.smanew...
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December 2, 2024 • 59 mins
In episode 145, host Kevin Schaefer talks with Carrie Manriquez from Sacramento, California. Carrie is an elementary school principal, and her 24-year-old son Ryan has SMA type 2. She talks about her experiences as a parent and caregiver, connecting with the SMA community, and helping Ryan transition to adulthood.
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October 21, 2024 • 53 mins
In episode 144, host Kevin Schaefer talks with Doug McCullough from central New Jersey. The author of “A Billion People in the Shadows,” a new book about understanding disability, Doug previously worked at Johnson & Johnson Pharmaceuticals and has a background in public speaking. He talks about growing up with SMA type 3, navigating employment with a disability, and advocating for an inclusive society.
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September 9, 2024 • 46 mins
In episode 143, host Kevin Schaefer talks with Cory Lee from Lafayette, Georgia. A renowned expert on disabled traveling, he has visited all seven continents from his wheelchair. He runs the Curb Free With Cory Lee blog and takes part in speaking engagements around the world. Join the two as they discuss growing up with SMA, Cory’s travel origins, and his hopes for the future of accessible travel.
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August 5, 2024 • 50 mins
In episode 142, host Kevin Schaefer talks with Savannah and Will Huff from Thomasville, Georgia. Savannah, who has SMA type 3, met Will in 2018. Listen in as they discuss their marriage, careers, and the intersection of married life and caregiving.
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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June 24, 2024 • 50 mins
In episode 141, host Kevin Schaefer talks with Quinn Bucher (he/they) from Athens, Ohio. A student at Earlham College studying theater, he talks about growing up in an arts-oriented household, making theater inclusive for disabled students, and the intersectionality of being trans and having SMA.
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June 5, 2024 • 39 mins
Note: This podcast includes thoughts about suicide. If you are struggling with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (988, or 988lifeline.org, available 24/7), Samaritans in the U.K (samaritans.org), or Samaritans of Singapore in Singapore (sos.org.sg).
In episode 140, host Kevin Schaefer talks with Lucy Trevino from Chicago, Illinois. Lucy is passionate about academia ...
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May 6, 2024 • 38 mins
In episode 139, host Kevin Schaefer talks with Dianna Warren from Canton, Ohio. Dianna is an ambassador for Ms. Wheelchair USA, and for 32 years she ran a disability bowling league. She discusses these experiences, living with SMA Type 3, and her marriage of 44 years.
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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April 8, 2024 • 38 mins
In episode 138, host Kevin Schaefer talks with Nolan, who lives with SMA, and Blake Shofner from Princeton, Illinois.
The brothers discuss their dynamic as siblings and business partners, as they are the founders of Mullet Bros Co. They also discuss the importance of humor in their lives and how Nolan’s SMA has impacted them.
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March 4, 2024 • 47 mins
In episode 137, host Kevin Schaefer talks with Jared Wayland from Ontario. Jared discusses growing up with SMA type 3 and becoming a husband and father. He also talks about his passion for music and graphic design and shares advice about building confidence with SMA.
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.<...
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February 6, 2024 • 37 mins
In episode 136, host Kevin Schaefer talks with returning guest Shaniqua Granby as she shares life updates and discusses how she navigates struggles and embraces community.
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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January 8, 2024 • 35 mins
In episode 135, host Kevin Schaefer talks with Ryan Kinnear from Glendale, Arizona. An avid fisherman and outdoor enthusiast, he uses assistive technology to pursue his passions. Ryan talks about using this technology, growing up with SMA, and managing daily life.
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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December 4, 2023 • 59 mins
In episode 134, host Kevin Schaefer talks with Dr. Edward Smith from Hillsborough, North Carolina. Dr. Smith spent the majority of his career as a clinical neurologist, and Kevin was one of his longtime patients. They talk about the state of SMA research and the work Dr. Smith is doing now. SMA News Today contributor Michael Morale also joins to talk with Dr. Smith about his treatment experiences.
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November 6, 2023 • 32 mins
In episode 133, host Kevin Schaefer talks with Rebecca Mulhall from Cleveland, Ohio. Rebecca has three kids, and her youngest two are twins with SMA. Her son with SMA also has Down syndrome. Rebecca talks about the intersection of these disabilities, her family’s daily life, and her advice for other parents in the SMA community.
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October 3, 2023 • 29 mins
In episode 132, host Kevin Schaefer talks with Collin Pollock from Garden Grove, California. Collin and his wife, Kyla, run a barbeque sauce business called WheelyQ. He discusses becoming a business owner, growing up with SMA, and being a husband and father.
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Collin’s website: https://wheelyq.com/
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September 4, 2023 • 49 mins
In episode 131, host Kevin Schaefer talks with Candis Welch from Los Angeles, California. A disability advocate, DEI practitioner, and consultant, Candis won the 2023 Ms. Wheelchair California competition. She talks about growing up with SMA, the importance of representation, and how she’s cultivated an independent life.
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