#100: Interview with Gabrielle Runyon, College Student with SMA and Disability Advocate
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
15 Feb 202238min
#99: SMA and Motherhood
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://www.smanewstoday.com
1 Feb 20221h 2min
Spine Surgery Effective in SMA Type 1 Children & Mentally Preparing For Surgery
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/.
27 Jan 202211min
Wheelchair Hockey Linked to Physical, Psychological Gains & Preserving Privacy When Living with SMA
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/.
24 Jan 202210min
Scholar Rock Shares Design of Phase 3 Trial Testing of Apitegromab & Staying Organized With SMA
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/
20 Jan 202212min
#98: How to Manage Caregivers, a Chat with SMA Contributors DeAnn Runge and Michael Morale
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 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
18 Jan 202258min
Spinraza May Restore Development of Motor Neurons & Why Finding Reliable SMA Carers Is Not Easy
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/
17 Jan 20227min
Son With SMA Inspires Character on ‘Ordinary Joe’ TV Show & How SMA Can Shape Creativity
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/
13 Jan 202211min
