PODCAST · health
SMA News & Perspectives
by SMA News Today
Daily, digital coverage of the latest SMA news and perspectives.
Episodes
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#160: A conversation with muscular dystrophy columnist and advocate Patrick Moeschen
In episode 160, host Kevin Schaefer talks with Patrick Moeschen from Salem, New Hampshire. Patrick is a columnist for Muscular Dystrophy News, an advocate in the MD community, and a leader of the PPMD adult advisory committee. He talks with Kevin about his diagnosis story, getting involved in...
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#159: Emily Figueroa - Social Media Manager and Adult with SMA
In episode 159, host Kevin Schaefer talks with Emily Figueroa from Phoenix, Arizona. Emily is a social media manager and adult with SMA, as well as a teacher and Spanish-English interpreter at her church. She talks about shifting her mindset about disability, connecting with the SMA community…
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#158: Alberto Lopez -A single father talks about raising his daughter with SMA
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...
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#157: Delphine Andrews - Life coach and disability advocate with SMA
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...
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#156: Maylan Chavez and Sory Rivera: Friends and podcast hosts with SMA
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...
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#155: Jasmine Jackson, digital creator and mother with SMA
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...
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#154: Coach Damon Vincent, adaptive fitness specialist
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...
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#153: Annie Heathcote, Entrepreneur and Speaker with SMA
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...
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#152: Kamil Goungor, Disability activist
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...
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#151: Anton Paras, marketing executive in digital health
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…
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#150: Jenna and Tanya Vega share their love story
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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#149: Jessica Keogh, Ed. D., Educator and Life Coach With SMA
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:...
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#148: Ashley Fox and Madeline Engel discuss friendship and caregiving
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...
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#147: Brandi Lewis, rare disease advocate and speaker
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…
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#146: TJ Wall, graduate student with SMA
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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#145: Carrie Manriquez, Mother of adult son with SMA
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...
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#144: Doug McCullough, Advocate and Author With SMA
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...
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#143: Cory Lee, Travel Blogger and Influencer With SMA
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...
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#142: Savannah and Will Huff, Interabled Couple
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...
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#141: Quinn Bucher, Theater Student With SMA
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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#140: Lucy Trevino, Academic and Advocate
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).…
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#139: Dianna Warren, Ms. Wheelchair USA Ambassador
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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#138: Nolan and Blake Shofner, Brother Entrepreneurs
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...
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#137: Jared Wayland: Graphic Designer and Music Connoisseur
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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#136: Shaniqua Granby Discusses Identity and Community
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...
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#135: Ryan Kinnear, Fisherman and Hunter With SMA
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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#134: Dr. Edward Smith, Neurologist and SMA Specialist
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...
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#133: Rebecca Mulhall, Parent of Twins With SMA
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...
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#132: Collin Pollock, Business Owner With SMA
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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#131: Candis Welch, Disability Advocate and Ms. Wheelchair California
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...
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#130: Andrew Cherico, College Student With SMA
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…
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#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....
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#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...
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#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,...
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#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...
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#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…
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#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…
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#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...
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#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....
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#121: Pidgie, Singer and Songwriter With SMA
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....
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#120: Dom Evans, Activist and Filmmaker
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...
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#119: Chaz Hayden Discusses His Debut Novel
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...
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#117: Delphine Andrews and Kevin Davis, Interabled Couple
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...
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#118: Aging and SMA
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...
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#116: Shaniqua Granby, Law Professional With SMA
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...
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#115: Jose Flores, Author and Motivational Speaker
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....
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#114: Daniele Johnson, SMA Mom and Advocate
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....
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#113: Dustin Swafford, Power Soccer Coach and Player
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...
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#112: Lexi Villa, Social Media Influencer and Disability Advocate
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...
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#111: Steven Verdile, Graphic Designer and Disabled Creative
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...
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Frequently Asked Questions
How many episodes does SMA News & Perspectives have?
SMA News & Perspectives currently has 447 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is SMA News & Perspectives about?
Daily, digital coverage of the latest SMA news and perspectives.
How often does SMA News & Perspectives release new episodes?
SMA News & Perspectives publishes regularly with 447 episodes available. Check the episode list for the typical release schedule.
Where can I listen to SMA News & Perspectives?
You can listen to SMA News & Perspectives on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts SMA News & Perspectives?
SMA News & Perspectives is created and hosted by SMA News Today.
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