Sma News & Perspectives

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

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

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 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 p

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

SMA News Today’s multimedia associate, Price Wooldridge, discusses how screening for spinal muscular atrophy is now available to 87% of all newborns in the United States, according to Cure SMA. After noticing the lack of disability representation during the Olympic Opening Ceremony, DeAnn decided to post about. She shares her views and how she was surprised by the response from her post on the SMA News Today forums. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.

SMA News Today’s multimedia associate, Price Wooldridge, discusses how the FDA is reviewing a request that the use of Evrysdi, an oral and at-home SMA treatment, be extended to pre-symptomatic babies. Also, although exciting, getting a new wheelchair isn’t always easy. DeAnn can relate to columnist Brianna Albers recent article, “A Year Later, I’m Still Wearing Old Shoes.” She goes into detail about the process and what she continues to struggle with. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 100, host Kevin Schaefer talks with Gabrielle Runyon (she/her) from Louisville, Kentucky. Gabrielle is a sophomore at the University of Louisville, studying psychology. She talks about growing up with SMA, transitioning to college, and advocating for disabled individuals. ================================ Gabrielle’s 31 Days of SMA Story: https://smanewstoday.com/31-days-of-sma/2020/08/24/31-days-of-sma-gabrielle-runyon/ ================================ 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 99, host Kevin Schaefer talks with two mothers from the SMA community. Trudy Citovic lives in Oregon, and her daughter Alina has SMA. As an advocate for newborn screenings, she talks about the role SMA has played in her experience of motherhood. Carli Hamilton is a social media influencer and mother who has SMA. She lives in Utah with her husband and daughter. She shares her thoughts on becoming a mother and the nuances of parenting with a disability. ================================ Learn more about newborn screenings here: https://smanewstoday.com/news-posts/2021/12/03/muscular-dystrophy-canada-novartis-maritime-newborn-sma-screening-program/ ================================ 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://w

SMA News Today’s multimedia associate, Price Wooldridge, discusses how surgery to correct kyphoscoliosis — an abnormal curvature of the spine found in children with SMA type 1 — also allows Spinraza treatment. As Ari Anderson prepares himself for upcoming surgery, he looks for a suitable mantra to help get him through the fight ahead. In his recent article, “Preparing for Surgery, I Search for a New Mantra,” he chronicles why he needs surgery and how having a phrase to help boost his morale is helpful to maintain that fighting spirit. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.

SMA News Today’s multimedia associate, Price Wooldridge, reads an article about how men with spinal muscular atrophy or Duchenne muscular dystrophy who played wheelchair hockey showed quality of life gains relative to others. Also, when you rely on others for personal care, maintaining privacy can be difficult. DeAnn Runge talks about a situation that arose that has her questioning the level of privacy in her life. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.

SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock's global apitegromab trial, likely to open next year, will test its muscle-directed therapy in type 2 and 3 patients ages 2–21. Also, Alyssa Silva’s recent column is timely as it is a popular time of the year for organization. In, “Staying Organized Helps Me Simplify Life With SMA,” she talks about ways she stays organized so when life becomes overwhelming, she doesn’t have to worry about small things like where her cell phone charger is. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

In episode 98, host Kevin Schaefer talks with fellow SMA News Today contributors about hiring and managing caregivers. Listen as Kevin talks with DeAnn Runge and Michael Morale about their experiences with home healthcare, and how they find the right people. These panelists also discuss two recent columns from our main website. ================================ Join the conversation about caregivers here: https://smanewstoday.com/forums/forums/topic/starting-the-search-for-new-caregivers/ ================================ Columns: - ‘Don’t Quit Before the Miracle Happens’ by Sherry Toh - https://smanewstoday.com/columns/2022/01/05/instead-new-years-resolutions-im-making-playlist/ - Sharing Our Stories With the SMA Community’s Next Generation by Halsey Blocher - https://smanewstoday.com/columns/2022/01/07/sharing-our-stories-with-next-generation-sma-community/ ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To

SMA News Today’s multimedia associate, Price Wooldridge, discuses how a study in symptomatic SMA children suggests Spinraza also works to return development to these nerve cells, especially if given early. Also, with a vaccine mandate looming, DeAnn shares how this adds stress to an already difficult situation where retaining caregivers is concerned. She points out that wage restrictions and the nature of the job itself already make finding reliable staff difficult. Adding a vaccine mandate on top of that makes it virtually impossible. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

SMA News Today’s multimedia associate, Price Wooldridge reads an article about John Gluck, who has a type of muscular dystrophy, portrays versions of Joe's wheelchair-bound son with SMA on the NBC series "Ordinary Joe." Also, in Kevin Schaefer’s recent article, “Tick, Tick… SMA Adulthood,” he draws parallels between his life and the Netflix original movie, “Tick, Tick… Boom!.” Not only does he relate to losing friends all too soon, but he’s also struggled with balancing ambition and contentment. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/