The Spinal Muscular Atrophy Podcast with Kevin Schaefer

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. Recently, Anton went with Kevin to Anaheim, California, for part of the annual Cure SMA conference. There, they worked on a video about theme park accessibility and interviewed multiple people in th...

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.

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/ ================================ To take part in our ongoing discussion...

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. ================================ To take part in our ongoing d...

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 awar...

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. ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanews...

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. ================================ To take part in our ongoing discussions regard...

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 ...

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 trav...

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. ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums

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. ================================ To take part in our ongoing discussions regarding SMA, please vi...

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 passiona...

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. ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

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. ================================ To take part in our ongoing discu...

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. ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.

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. ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums

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. ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

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 experienc...

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. ================================ To take part in our ongoing dis...

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. ================================ Collin’s website: https://wheelyq.com/ ================================ To take part in our ongoing d...

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. ================================ To take part in our ongoing discussions...

In episode 130, host Kevin Schaefer talks with Andrew Cherico from Orlando, Florida. Andrew is a sophomore at the University of Central Florida and is studying sports journalism. He talks about growing up with SMA, shifting his mindset as a teenager, and connecting with others in the SMA community. ================================ To take part in our ongoing discussions regarding SMA, please ...

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. =============...

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 tak...

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.

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...

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 robertnkeann...

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. ========================...

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://...

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 ...

In episode 121, host Kevin Schaefer talks with Patricia Panzarino, who goes by her musician name, Pidgie. Pidgie is a singer and songwriter from Cape Cod, Massachusetts, and she has SMA Type 2. She discusses growing up in a pre-ADA era, building her music career, and starting Evrysdi. ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ===...

In episode 120, host Kevin Schaefer talks with Dom Evans (he/they), LGBTQ and disability activist and filmmaker. Dom discusses his background, growing up with SMA, and how he became an activist. He also talks about his longtime partner and their relationship. Note: This podcast includes thoughts about suicide. If you are struggling with thoughts of suicide, please contact the Suicide Preventio...

In episode 119, host Kevin Schaefer talks with Chaz Hayden, a young adult author with SMA. Chaz’s debut novel, The First Thing About You, tells the story of a 15-year-old boy with SMA named Harris who wants to reinvent himself. Kevin and Chaz discuss themes in the book, the personal experiences that influenced the story, and Chaz’s advice for other writers. ================================ Ch...

In episode 118, host Kevin Schaefer talks with work colleagues Michael Morale and DeAnn Runge about aging and SMA. They start by discussing Scholar Rock’s experimental therapy, Apitegromab, and go over recent updates surrounding its clinical trial. Then they talk about how SMA affects the way people think about getting older. Michael, DeAnn, and Kevin share their thoughts on aging as adults wit...

In episode 117, host Kevin Schaefer talks with Delphine Andrews and Kevin Davis from North Carolina. Delphine has SMA and she began dating Kevin in early 2020. They discuss their careers, daily lives, and the nuances of their relationship. ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in...

In episode 116, host Kevin Schaefer talks with Shaniqua Granby from Virginia Beach, Virginia. Shaniqua is an equal employment opportunity specialist, and she has SMA Type 3. She discusses going to law school, her faith and how it relates to her disability, and the advice she has for others with SMA. ================================ To learn more about Evrysdi, please visit http://www.Approved...

In episode 115, host Kevin Schaefer talks with Jose Flores from Miami, Florida. Jose is a bestselling author and motivational speaker who lives with SMA Type 3. He discusses his journey toward entrepreneurship, his marriage and family life, and becoming connected to the SMA community. ================================ Jose’s website: https://www.joseinspires.com/ =============================...

In episode 114, host Kevin Schaefer talks with Daniele Johnson from Evansville, Indiana. Daniele and her husband’s youngest son, Anthony, has SMA type 0. She talks about her son’s diagnosis, pursuing treatment, and how she and her family have adapted to life with SMA. ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ====================...

In episode 113, host Kevin Schaefer talks with Dustin Swafford from Georgia. Dustin has been playing and coaching a power soccer team for years, and his team recently won the national championship. He discusses his love of sports, having his brother as his primary caregiver, and starting his own financial business. ================================ To learn more about Evrysdi, please visit htt...

In episode 112, host Kevin Schaefer talks with Lexi Villa from Torrance, California. Lexi works in retail and shares her life with SMA on social media. She discusses moving away from home at a young age, becoming connected with the SMA community, and falling in love with her best friend from childhood. ================================ To learn more about Evrysdi, please visit http://www.Appro...

In episode 111, host Kevin Schaefer talks with Steven Verdile, a graphic designer and media creator from New York City. Steven is also the founder and editor-in-chief of The Squeaky Wheel, an online disability satire publication. He discusses living with SMA, working for NBC, and disability representation in media. ================================ Steven’s website: https://www.stevenverdile.c...

In episode 110, host Kevin Schaefer welcomes back to the podcast Ben Mattlin, an author and disability rights advocate. His upcoming book is called “Disability Pride: Dispatches from a Post-ADA World,” and is set to release on November 15, 2022. Ben discusses the evolution of this book, and what Disability Pride means to him. ================================ Pre-order Disability Pride: https:...

In episode 109, host Kevin Schaefer chats to several attendees from this year’s Cure SMA conference in Anaheim, California. Ashley Fox, Ryan Manriquez, and Kyle Harris discuss reuniting after such a long time, connecting with other adults with SMA, and share their highlights from the conference. ================================ To learn more about Evrysdi, please visit http://www.ApprovedForS...

In episode 108, host Kevin Schaefer talks with Logan Nantz from southern Indiana. Logan’s daughter Hayden is two years old and has SMA. They discuss Logan family’s story, as well as the news that Genentech recently approved Evrysdi for infants under the age of two months. ================================ Evrysdi story: https://smanewstoday.com/news-posts/2022/06/01/sma-treatment-evrysdi-gets-...

In episode 107, host Kevin Schaefer talks about mental health with LGBTQ+ and disability advocates. Panelists include Ali Ramos (she/her), licensed social worker; Sherry Toh (she/they), columnist for SMA News Today; and Hugo Trevino (he/him), who works in academia. They all share their experiences managing their own mental health and offer advice for others in disability and LGBTQ+ spaces. ===...

In episode 106, host Kevin Schaefer talks with a group of rare disease and disability advocates about women’s mental health. Panelists include Charlene Marshall, licensed mental health professional, and columnist for Pulmonary Fibrosis News; Brianna Albers, columnist for SMA News Today; Gabrielle Runyon, a college student with SMA at the University of Louisville; and Jessie Madrigal writer for ...

In episode 105, host Kevin Schaefer talks with rare disease and disability advocates about men’s mental health. Panelists include Paris Dancy, licensed mental health professional, and columnist for Cushing’s Disease News; Matt Lafleur, columnist for Friedreich’s Ataxia News; Michael Morale, multimedia specialist for SMA News Today; and Ty Dykema, artist and disability advocate. They all share t...

In episode 104, host Kevin Schaefer talks with Ben Lou from San Diego, California. Ben is a student at MIT, planning to double major in math and physics. He discusses his lifelong love for learning, growing up with SMA, and the importance of disability representation in STEM education. ================================ Article about Ben: https://smanewstoday.com/news-posts/2021/10/11/sma-ben-l...

In episode 103, host Kevin Schaefer talks with Stephen Mikita and Arya Singh, two individuals with SMA who have years of experience with clinical trials. Stephen, 66, was an Assistant Attorney General for the state of Utah for more than 30 years, representing the three largest state agencies providing services and protections for individuals with disabilities. As one of the oldest survivors of...

In this episode, host Kevin Schaefer talks to Amber-Joi Watkins, an SMA mom and advocate. Amber-Joi talks about raising her daughter, Celine, and becoming part of the SMA community. She also discusses her daughter’s treatment journey, their daily lives, and shares some advice she has for other parents. ================================ To learn more about Evrysdi, please visit http://www.Appro...