SMA News & Perspectives

In episode 158, host Kevin Schaefer talks with Alberto Lopez from Los Angeles County, California. Alberto is a consultant and a father of three daughters, one of whom has SMA. He discusses adapting to his daughter's diagnosis years ago, connecting with the SMA community, and navigating life as a single parent. Alberto's mindset is one of optimism and communication, which is something he hopes to h...

In episode 157, host Kevin Schaefer talks with Delphine Andrews from Durham, North Carolina. Delphine is a life coach and disability advocate living with SMA. She talks with Kevin about her journey toward accepting herself, advocating for others, and transitioning to her current career path. She also discusses intersectionality, managing caregivers, and gives advice on life and relationships. Delp...

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 Tyler, Texas. They talk about the evolution of their friendship, forming connections with others in the SMA community, and empowering others with disabilities through storytelling. ======================...

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. She talks about growing up with SMA, her journey toward motherhood, connecting with the SMA community, and becoming an advocate for other disabled parents. Jasmine’s Instagram: https://www.instagram.co...

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, including SMA. He talks about his journey as a personal trainer, living with his own rare disease, and building a community with others in his field. Damon’s website: https://fitnessforspecialneeds....

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 and work embody the belief that disability doesn’t mean inability. Diagnosed with Spinal Muscular Atrophy (SMA) at just 13 months and in a wheelchair by age 2, she has dedicated her life to breaking b...

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 the Greek independent living organization, i-living. In this episode, Kamil shares his experiences growing up with SMA, pursuing education and career opportunities, and advocating for the disabled commu...

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 the S...

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 discussions rega...

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 discus...

In episode 147, host Kevin Schaefer talks with Brandi Lewis from Birmingham, Alabama. A blood disorder awareness educator, TEDx speaker, writer, and nonprofit founder, Brandi is passionate about helping others diagnosed with chronic illnesses. She herself has been diagnosed with aplastic anemia and PNH, the symptoms of which began in 2009. Her nonprofit, Brandi’s Blessings, was created to spread a...

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.smanewstoday...

In episode 145, host Kevin Schaefer talks with Carrie Manriquez from Sacramento, CA. 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 regarding SMA, plea...

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 soc...

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....

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 visit w...

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 a...

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 discussions...

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 experiences....