SMA News & Perspectives

SMA News Today

Daily, digital coverage of the latest SMA news and perspectives.

  1. #153: Annie Heathcote, Entrepreneur and Speaker with SMA

    SEP 25

    #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 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. Visit our website at www.smanewstoday.com Follow us: IG: instagram.com/smanewstoday Facebook: facebook.com/SMAnewstoday X: x.com/smanewstoday To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

    31 min
  2. #152: Kamil Goungor, Disability activist

    AUG 28

    #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 growing up with SMA, pursuing education and career opportunities, and advocating for the disabled community. ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

    45 min
  3. #151: Anton Paras, marketing executive in digital health

    JUL 30

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

    36 min
  4. #150: Jenna and Tanya Vega share their love story

    JUL 1

    #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.

    29 min
  5. #149: Jessica Keogh, Ed. D., Educator and Life Coach With SMA

    MAY 21

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

    41 min
  6. #148: Ashley Fox and Madeline Engel discuss friendship and caregiving

    APR 16

    #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 navigating graduate school and careers. ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

    45 min
  7. #147: Brandi Lewis, rare disease advocate and speaker

    FEB 27

    #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 and PNH, the symptoms of which began in 2009. Her nonprofit, Brandi’s Blessings, was created to spread awareness and support blood disorder patients. She notes that her greatest accomplishment is having saved three lives by encouraging people to register to become bone marrow donors. Brandi is a dog lover of a labradoodle, Milo, and thinks laughter is the best medicine. Follow Brandi on Instagram at @_brandilewis_! Brandi’s website: www.brandilewis.com Brandi’s column: https://pnhnews.com/category/columns/from-fear-to-fighter-a-column-by-brandi-lewis/ ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.

    37 min
  8. #146: TJ Wall, graduate student with SMA

    JAN 14

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

    32 min
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About

Daily, digital coverage of the latest SMA news and perspectives.

Information

  • Creator
    SMA News Today
  • Years Active
    2017 - 2025
  • Episodes
    440
  • Rating
    Clean
  • Copyright
    © All rights reserved
  • Show Website
    SMA News & Perspectives