In episode 109, host Kevin Schaefer chats to several attendees from this year’s Cure SMA conference in Anaheim, California. Ashley Fox, Ryan Manriquez, and Kyle Harris discuss reuniting after such a long time, connecting with other adults with SMA, and share their highlights from the conference. ================================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

In episode 108, host Kevin Schaefer talks with Logan Nantz from southern Indiana. Logan’s daughter Hayden is two years old and has SMA. They discuss Logan family’s story, as well as the news that Genentech recently approved Evrysdi for infants under the age of two months. ================================Evrysdi story: https://smanewstoday.com/news-posts/2022/06/01/sma-treatment-evrysdi-gets-fda-approval-babies-under-2-months-old/ Logan’s 31 Days of SMA story: https://smanewstoday.com/31-days-of-sma/2020/08/07/31-days-of-sma-logan-nantz/ ================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums

In episode 107, host Kevin Schaefer talks about mental health with LGBTQ+ and disability advocates. Panelists include Ali Ramos (she/her), licensed social worker; Sherry Toh (she/they), columnist for SMA News Today; and Hugo Trevino (he/him), who works in academia. They all share their experiences managing their own mental health and offer advice for others in disability and LGBTQ+ spaces. ================================Ali’s Work Facebook page: https://www.facebook.com/aliramostherapy Sherry’s column: https://smanewstoday.com/wandering-the-lines-sherry-toh/ Hugo’s Instagram: https://www.instagram.com/htrevin2/ ================================To learn more about Evrysdi, please visit http://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 http://www.smanewstoday.com

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. ================================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

================================To learn more about Evrysdi, please visit http://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

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. ================================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/ ================================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

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

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 to write 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 of public health next year.================================The SMA Foundation: https://smafoundation.org/ Arya’s book: https://www.amazon.com/Courageous-Calla-Clinical-Trial-Singh/dp/B0892B4D8G ================================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

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

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/.

In this episode, host Kevin Schaefer talks with John Milligan from Austin, Texas. John is a Senior Manager in RND at Asuragen, a biotechnology company. They chat about the state of SMA testing, newborn screenings, the evolution of SMA research, and his day-to-day life.================================Learn more about Asuragen: https://asuragen.com/ ================================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