SMA News & Perspectives

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-a...

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. =======...

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 end...

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 thei...

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-pu...

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...

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. ApprovedF...

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 in...

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 a...

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...

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 abo...

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/2020/08/2...

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...

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 N...

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 pr...

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 organ...

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 caregiver...

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 n...

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 rel...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how The National Institute for Health and Care Excellence has recommended that Evrysdi be provided at low or no cost to eligible SMA patients in England. Also, the process of modifying a wheelchair for specific needs is no easy task. DeAnn Runge shares how difficult it’s been for her simply to receive comfortable arm rest pads. Eve...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improved fine manual dexterity in both hands of five children with SMA type 2 over 1.5 years of treatment, a case series shows. As the new year gets underway it’s a great time to hear what motivates people. In Ari Anderson’s recent column, “The Blessings That Spark My Ambitions for the New Year,” he talks about an oppo...

In episode 97, host Kevin Schaefer talks with Ali Ramos (she/her) from Amarillo, Texas. Ali is a licensed social worker and activist, focusing on both the disability and LGBTQ communities. She talks with Kevin about living with SMA, pursuing independence, and her advocacy work. ================================ Ali’s Instagram: https://www.instagram.com/kittylegs/ Ali’s Facebook page: https://www.f...

SMA News Today’s multimedia associate, Price Wooldridge, reads a news article on how the delays in Spinraza treatment due to the COVID-19 pandemic did not directly result in worsening symptoms in children, a study in Italy says. Also, after reflecting on 2021, DeAnn shares what her plans are for 2022. Although she doesn’t make resolutions, she’s made goals and explains what they mean to her. Are y...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study showed for the first time that genetic analysis of dried saliva spots correctly identified people with spinal muscular atrophy. Also, when you have SMA there are additional aspects to consider when doing things like moving into a new house. Halsey Blocher references some of these challenges in her article, “Giving Thank...

SMA News Today’s multimedia associate, Price Wooldridge, discusses how not having Spinraza therapy as prescribed – called treatment non-adherence – increases overall costs and healthcare use for SMA patients. Also, DeAnn Runge shares why December is a bittersweet time of the year. Despite that she’s looking forward to the upcoming year. Are you interested in learning more about spinal muscular atr...