503 episodes

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

SMA News & Perspectives SMA News Today

    • Health & Fitness
    • 5.0 • 5 Ratings

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

    #106: A Conversation About Women’s Mental Health With Rare Disease and Disability Advocates

    #106: A Conversation About Women’s Mental Health With Rare Disease and Disability Advocates

    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 endometriosis.net and mental health advocate. They all share their experiences managing their mental health and offer advice for others in disability spaces.

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    Charlene’s column: https://pulmonaryfibrosisnews.com/living-with-ipf-charlene-marshall/

    Brianna’s column: https://smanewstoday.com/the-wolf-finally-frees-itself-brianna-albers/

    Gabrielle’s Instagram: https://www.instagram.com/gab.davetta/

    Jessie’s Instagram: https://www.instagram.com/weemissjess

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    To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com

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

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    For the most up-to-date information regarding SMA, please visit www.smanewstoday.com

    • 33 min
    #105: A Conversation About Men’s Mental Health With Rare Disease and Disability Advocates

    #105: A Conversation About Men’s Mental Health With Rare Disease and Disability Advocates

    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 their experiences managing their mental health and offer advice for others in disability spaces.

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    Paris’ column: https://cushingsdiseasenews.com/surviving-and-thriving-paris-dancy/

    Matt’s column: https://friedreichsataxianews.com/little-victories-matthew-lafleur/

    Michael’s videos: https://www.youtube.com/playlist?list=PLtRCVbeiSodlFLsjQBls3fM_EOnm4o6GV

    Ty’s Instagram pages: https://www.instagram.com/breachthelevee/

    https://www.instagram.com/tmd.art/

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    To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com

    ================================

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

    ================================

    For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

    • 55 min
    #104: Interview With Ben Lou, Mathematics Student With SMA

    #104: Interview With Ben Lou, Mathematics Student With SMA

    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.

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    Article about Ben: https://smanewstoday.com/news-posts/2021/10/11/sma-ben-lou-pursuing-academic-dreams-mit/

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    To learn more about Evrysdi, please visit www.ApprovedForSMA.com

    ================================

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

    ================================

    For the most up-to-date information regarding SMA, please visit www.smanewstoday.com

    • 33 min
    #103: Clinical Trials and Advocacy with Stephen Mikita and Arya Singh

    #103: Clinical Trials and Advocacy with Stephen Mikita and Arya Singh

    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 SMA, Mr. Mikita has been uniquely positioned to advocate for the patient perspective at every stage of drug development.
    Arya is a senior at Yale and has dedicated much of her childhood to clinical research. Her parents are the founders of The SMA Foundation, which has brought some of the world’s greatest scientists into SMA research. Arya herself has been a part of clinical research, and this experience was the inspiration behind a children’s book, Courageous Calla & The Clinical Trial. She is a member of the New Haven Commission on Disabilities, with plans to obtain her undergrad degree this spring and a master’s on public health next year.

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    The SMA Foundation: https://smafoundation.org/

    Arya’s book: https://www.amazon.com/Courageous-Calla-Clinical-Trial-Singh/dp/B0892B4D8G

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    To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com

    ================================

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

    ================================

    For the most up-to-date information regarding SMA, please visit www.smanewstoday.com

    • 42 min
    #102: Interview with Amber-Joi Watkins, SMA Mom and Advocate

    #102: Interview with Amber-Joi Watkins, SMA Mom and Advocate

    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.ApprovedForSMA.com

    ================================

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

    ================================

    For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

    • 31 min
    Using Ultrasound May Help in SBMA Diagnosis & Dealing With Hospital Stays

    Using Ultrasound May Help in SBMA Diagnosis & Dealing With Hospital Stays

    SMA News Today’s multimedia associate, Price Wooldridge, discusses how men with spinal and bulbar muscular atrophy (SBMA) had abnormally small nerves in the limbs, especially the arms, as measured by ultrasound.

    Alyssa Silva’s recent post about her hospital stay has DeAnn thinking about her own time in the hospital. Find out what about SMA caught her off guard and how she dealt with it.

    Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.

    • 8 min

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