SMA News & Perspectives

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 advocacy work, family life, and his message for other disabled people.

Patrick’s column: https://musculardystrophynews.com/muscle-memoirs-lgmd-experiences-patrick-moeschen/

PPMD page: https://www.parentprojectmd.org/

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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, and how her faith and familial relationships have impacted her journey.

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Emily’s Instagram: https://www.instagram.com/emily_figueroa_/

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

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 help others in the SMA community strive toward.

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

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.

Delphine's website: https://disabilityreclaimed.com/

Delphine's Instagram: https://www.instagram.com/disability_reclaimed/

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

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.

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

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.com/my_wheellife/

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

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.com/

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

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 barriers, championing accessibility, and inspiring others with her message of resilience and faith.

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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 community.

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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 SMA community. During this conversation, Anton reflects on this experience, shares his perspective on engaging with rare disease communities, and offers insight into what others in the digital health space can do to better support patients and caregivers.

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